In just another ten years, Cookie Johnson's life as an HIV-awareness advocate would have outpaced, her humble upbringing in Detroit, her stint as a department store buyer in Toledo, Ohio, and, most notably, her life as the wife of an NBA great.
But while HIV advocacy is a platform Johnson says she had to arrive at swiftly, following her husband, Earvin "Magic" Johnson's 1991 announcement about his battle with the disease, it's one that she's been speaking from ever since.
"The thing I had to come to grips with right ways was, are we going to let this disease take over us and destroy our family? Or are we going to fight for it?," Johnson told The Huffington Post, recalling the emotional jam she found herself in between her husband's diagnosis, learning that she was two months pregnant and educating herself about what was then thought to be a terminal disease. "I had to make that decision right away, because he was letting me know, 'I’m letting you off the hook. I did this thing, so you don’t have to deal with it if you don’t want to,” she said. "But I ultimately chose to save my husband and my family."
Johnson elaborated on her passion for HIV advocacy took shape in an interview with The Huffington Post and why other women need to join the fight on the eve of this year's National Women and Girls HIV/AIDS Awareness Day.
Going from the shock of your husband's positive diagnosis to advocating for greater awareness about the disease -- how did that happen for you?
For us, it was super hard. That was back in the day, in 1991, when people were dying at alarming rates. That was when people didn’t know anything about the disease, so it was very frightening.
The number one step was to educate ourselves -- what we could do to make sure he stayed healthy; what we could do to make sure he never got sick, and to make sure I was fine and the baby was fine.
We also had to make a decision at that point, which Elizabeth Glaser was very instrumental in. We went to go see her right away and the first thing she said is, “You have to go fight. You have to fight for the people with no voice.” And that’s when we knew we had to be advocates, that he had to be the face of HIV and AIDS for heterosexual people. He had to make the decision that it was not about just him, he couldn’t be selfish and just wallow in it. And I knew it, too. I knew it was just God’s purpose for us and my purpose was to be by his side and make sure he was strong enough to do that.
That’s been our fight ever since. We’ve never stopped -- 22 years later.
In those 22 years that you've been doing this work, HIV has really evolved, would you say?
Yes. The advancements in medicine have been amazing. We still don’t have that one cure, but this [baby being cured] is a great breakthrough. And who knows? Maybe it is.
But even without the cure, the advancement in medicine have been significant. Now you can take a little cocktail. You don’t have to take 20 pills, they don’t affect you like they used to, with all of the side effects that they had back in the day.
The other good thing now (and then) is that if people get test on a regular basis and find out early enough that they have the disease, they can get on the medication and live long, healthy lives.
There's still a lot of stigma around that, many who still think that that people with HIV look a certain way or feel a certain way. Do you agree?
It makes me angry when I think about it because there are so many people who are ignorant to the disease. There are still people who think, “Oh my God, I can’t hug somebody.” But there are a lot of people who aren’t like that anymore.
We have come a long way, but we yet have a long way to go. When somebody tells you they have diabetes, you embrace them, you try to support them. If you’re with them when they’re eating you’d go, “Hey, you shouldn’t be eating that.” You just take action to help them. But when someone tell you they have HIV most people... really distance themselves and that’s so wrong. You can still hug a person, you can kiss a person, you can still sleep with a person, as long as you use protection. You can live a normal life with HIV and AIDS, as long as you get on your medication and precautions are taken. They’re normal, just like everyone else.
We recently did a series aimed at dispelling some of that stigma called "What HIV Looks Like." How would you respond to that? What does HIV look like to you?
To me, HIV is no different than any other critical disease and everybody has to think of it that way. It’s a disease that people get and once they get it, they need help. They don’t need you to run away from them. They need help mentally and physically.
Today, I think because it’s a sexual disease, mostly, or drug-related, or gay, a lot of people don’t look at it in a positive context [when it comes to] helping. It’s like, “Oh no, they deserve it, because they shouldn’t have done what they did."
That’s the biggest thing we have to knock down. These people need to be embraced, they need to be loved and nurtured. They need your help.
If you came to them and said, “I have cancer,” immediately they would say “What can we do to help? We’re going to ban together.” But when you say "HIV," they say, “How did you get that?”
I can speak for the African-American communities. I think the problem there is that most are faith-based communities, especially the older members, and they just didn’t talk about sex. This is a sexual disease in their mind -- this disease you got from going out and having sex when you should have been abstaining -- and you don’t get the support you need.
Churches still aren’t totally involved in this and on track with it either. The church feels if they advocate for this -- educating people about the disease, passing out condoms -- they are advocating for sex, which is against what the bible says.
But the reality is here: People are still dying, people are still getting the disease, especially in our African-American communities, in our Latino communities, and the churches need to support and get behind it.
Many bigger churches have ministries for alcohol abuse, or mental health or for women who’ve been raped. Why can’t they have a ministry for people who are HIV victims? Or have it be a part of the mental health thing where you can at least help them to stay positive and then direct them to a healthcare facility, so they can get help?
We also really have to concentrate on our young people. I feel that because people like my husband are living with the disease and they’re living healthy, productive lives, [young people] not afraid of it anymore, so they’re not taking the precautions they need.
People get comfortable, they have medication, they realize that life with HIV is not terrible and they let their guard down. We've seen situations where one partner is positive and the other isn't, but because of comfortability, they both end up positive down. Has that been a challenge in your personal life?
That is true. You do get comfortable and forget sometimes and you have to remind yourself. Because we do this work, it reminds us all the time. We’ve had times where we’ve forgotten, but we always get back on it because the work we do reminds us.
The other thing that happens when people forget and have unprotected sex, what they don’t realize is there are different strains of HIV. So even though you’re positive, you can go out and get another strand of it. Then you’re worse off because you’re immune system is fighting off two viruses.
That’s something that I learned in doing this work.
Why is this message especially important to women and girls?
Women today are like super women. We work, we’re mothers, we’re wives, we take care of our elderly parents; we’re so busy going and doing and we don’t take the time to take care of ourselves. If we have a pain or feel extra tired, we just push through it rather than going to the doctor and checking it out. But women have to learn to slow down and take care of themselves first, meaning they have to get tested, get a physical, go get checked out.
Number two, when it comes to relationships, women usually take the subordinate position on whether or not they want to use a condom. But we have to learn to stand up for ourselves.
You have to empower yourself to say, if he doesn’t want to wear [a condom], then sorry.
I also tell the women that they need to talk to the young girls. And they should probably start in fifth or sixth grade. My mom never talked to me about sex and I know it is a tough thing. But when you have that talk, you have to add in all of the different diseases and what they do and how to watch out for them.
It’s not to educate them to go out and have sex. It’s educating them so that if this situation comes up, and you have to make a choice, you can make the best choice.
We were on the Oprah show in 2003 or 2004 for World AIDS Day and Oprah decided, because we were going to be on there, to feature a group of women who were HIV positive. There was one young woman, she was very young -- at the time she was diagnosed she was about 18 -- who Oprah asked to tell her story.
She had been getting sick and didn’t know why. Whey they finally diagnosed her with HIV, she looked at the doctors and said “What is that?” Oprah looked at her and said, “Where were you when [Magic] made his announcement?” and she said “I was six. I didn’t understand this at six.”
That goes to show you that since that day, when we made all that noise, these new generations are not even thinking about it. [The noise] has died down and people aren’t even talking about it. We need to make noise about it again so these young people will remember it and understand and be responsible!
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