Photo credits: Mor?nike Giwa Onaiwu
It seems like “everybody and their mama” is doing or has done some type of “top ten” list about this thing or that thing. I’m no follower, but it looks pretty harmless. So I decided to come up with one of my own. This is a spontaneous list so I’m sure there are many more things that could have been covered other than the ones I’ve listed here. These are just mine. 🙂 So here goes…10 things you need to know about families affected by HIV.
?1. For the most part, we are very much like your family. We laugh. We cry. We joke. We have fun. We love one another. We just happen to also have one or more members who have been diagnosed with HIV.
?2. I chose the words “living with HIV” because that’s exactly what people diagnosed with HIV are doing – living. NOT dying. Advances in medicine over the years have transformed HIV from what was once viewed as a death sentence to a chronic illness that’s fairly easy to manage. People living with HIV now have a life expectancy that’s not much different than people who don’t have it – and are able to, if they desire, marry HIV negative individuals, have satisfying lives (including romance) and give birth to (HIV negative) children, all WITHOUT transmitting HIV!
?3. We have a greater chance of getting struck by lightning or winning the lottery than we do of contracting HIV from the family member(s) in our home with the diagnosis. HIV has never (nevernevernevernever) been transmitted in a typical household setting. We share eating utensils, play, roughhouse, enjoy hugs and slobbery nighttime kisses, change diapers, tend to boo-boos, etc. – with ZERO risk of transmission.
?4. The people in our families who don’t have HIV who marry/parent/live with/adopt/etc. the people in our families who are living with HIV aren’t saints nor deities simply for loving someone whose HIV status is different than theirs. They don’t deserve, nor want, accolades and praise for being in one another’s lives. They married/connected with/adopted/etc. for love, and they feel that they are mutually lucky to share their lives with one another. That’s fully rewarding in and of itself.
?5. You can’t tell by looking at us which particular member(s) of our family has the diagnosis because HIV doesn’t have a certain “look.” It could be one of us, or two of us. It could be all of us. To us, it doesn’t matter which one(s) it is…what matters most is that we are family and that we have each other.
?6. Families like us are everywhere, and we are diverse. We are black, we are white, we are Latino/a, we are Asian, we are indigenous/First Nations, we are biracial/multiracial. We live next door to you, go to school with you, we are your physician, we are your attorney, we are your cashier, we are your stylist. We are gay, straight, bi, pan, ace. We are neurotypical and neuro-atypical. We are old and young, citizen and immigrant, rich and poor.
?7. HIV is just one part of the many aspects that make up our family. It’s important, but so are so many other things. So please don’t dwell on it. We don’t want your pity. We just want your friendship and your respect; the same respect you’d give to any other family.
?8. We are NOT ashamed of HIV, but for various reasons while some HIV affected families are pretty open about it others choose to maintain a sense of privacy about living with HIV. Both choices are equally good and make total sense. Every family has a different support system, lives in a different community, has different strengths, different challenges, different needs. Disclosure is very individual; with some families preferring being more public, some preferring privacy, and some falling in-between the two. However, if we do entrust you with information about our HIV status, we expect you to abide by THE LAW and not share with others without obtaining our explicit permission.
?9. It hurts us when people use stigmatizing language about us and about HIV such as “HIV infected” and “AIDS victim.” Neutral and person-first language is preferred by most people in the HIV community.
10. We need you to align with us and help draw attention to issues that affect us – because although your family might not be like mine because HIV is a public health issue inadvertently those issues affect you in some way too. Stigma, lack of interest in HIV related issues, and misinformation about HIV hurts more and causes more destruction than HIV itself ever will. It is the reason why the saliva of a person living with HIV is consider a “deadly weapon” in many states and exposing someone to it can lead to a conviction of “attempted murder” even though HIV isn’t transmitted that way. It’s the reason why we are at risk of having critical HIV research and services funding slashed at state and federal levels – even though there is still a great need. It’s the reason women and girls living with HIV experience violence at a rate four times higher than those without HIV. Stigma is deadly, and there’s only so many of us – families like mine – out there. We need families like yours, that are not affected by HIV, to help dispel stigma too. Help “infect” everyone with the truth so that we can be accepted and not feared.
And here’s how to start!
For more information about HIV, visit some of the websites below. Get educated!
Mor?nike Giwa Onaiwu is a mom, community advocate, and writer. An Autistic woman of color in a multicultural and neurodivergent HIV affected family, Mor?nike is involved in various social justice activism endeavors including HIV-related advocacy, disability rights, research, gender and racial justice, and anti-stigma. She considers her family, especially her children, to be her greatest accomplishment.