Overcoming the Stigma of Living with HIV/AIDS as a Mother

Women of color have been disproportionately affected by HIV/AIDS. HIV Maternal Health Director for Black Ladies and Public Health, Deirdre Speaks Johnson, joins us on the podcast to discuss her personal journey with HIV, how it affects maternal health, and how she's working to educate the black community to end stigmas and the criminalization of people living with HIV/AIDS.

Episode Transcript

(00:01):
Maternal done. In some states,you cannot breast or chest reach your child
if you're living with HIV, CPSwill be called, you will be criminalized.
All of these wonderful things. Andwhat do we here on the regular
Breast is best. But if Ican't breastfeed and that's what I want to
do, then you're telling me Ican't do what I want to do and

(00:23):
that's what I want to do formy child. Welcome to Maternal Home to
access in information for mothers of color. Women of color have been disproportionately affected
by HIV AIDS. HIV Maternal HealthDirector for Black Ladies in Public Health,
Deirdre Johnson joins us on the podcastto discuss her personal journey with HIV,
how it affects maternal health, andhow she's working to educate the Black community

(00:47):
to end stigmas and the criminalization ofpeople living with HIV AIDS. Welcome to
Meternal. I am Kenye Gibson herewith my co host Jay Wilson of Melanated
Moms, and we are joined instudio today by HIV Maternal Health Director Dear
Drew Johnson from Black Ladies and PublicHealth. Welcome to Maternal Thank you.

(01:07):
Thank you for having me. It'ssuch a pleasure to be here with my
dear friend Jane and my new friendKenya. Yes, yes we love new
friends. Yes we do. Yes, yes, So I wanted to start
with your journey and your background beforewe got into all the things that you're
doing in this space. Thank you, m one. I have to say
happy birthday to my youngest womb nugget. Today is their birthday. They're twenty

(01:32):
two years old. Design The reasonwhy I bring them up was I actually
found out my HIV status. Well, I was pregnant with them, and
so this actually started the work becausethe one thing for sure and two things
for certain, I wasn't really worriedabout my health. I was worried about
their health, and so I reallymade the journey to learn more about HIV,

(01:52):
how it was affected my body,and how it was going to affect
their body as they were growing inside. And so long story short, I
found out as much as I could, and even while I was pregnant.
My first presentation was actually at TCWilliams from Remember the Titans. I was
pregnant with them at the time andstarted speaking twenty two years ago and have

(02:14):
not stopped speaking about the importance ofknowing your HIV status. If you do
know your HIV status, and it'spositive to get treatment, especially if you're
a parent, to know what youneed to do for yourself and for your
children, and then also how toeducate the public and let the public know
how to support and love on us. So I haven't shut up yet.

(02:35):
My actual last name was Johnson,but IM just for the for the Graham,
for the folks. It's st justspeaks because I always will use my
voice to speak about HIV and howit affects those of us that are parenting
and then those that love us aswell. Yeah, I want to back
it up really quick though, becauseyou said something that I felt was super

(02:55):
key. So you're a newly mom, right, you find out that you're
pregnant, and then you're going throughother testing, and then you find out
that you're HIV positive. Like whatwas going through your mind at that moment
in time? So many things.So the person that I was with at
the time was very abusive you,I mean, was toxic, abusive,

(03:16):
whatever you want to say. Iteverything under the sun, from physically,
emotionally and even sexually abusive and atthe time, I was trying to figure
out a way to get out.And I found out after we had moved
from Virginia to Texas that I waspregnant, and of course during that pregnancy
moment, they test you, butI like to say routor or tutor for
everything. And they had tested mefor HIV. I told him that was

(03:38):
fine, wasn't worried about it.I knew how many sexual partners I had
had and all that great stuff,thinking I knew everything. And when the
test came back, they didn't tellme, of course, over the phone.
They told me to come in.And you know, I'm always a
happy, go lucky person. Ohit's just my iron, no problem,
give me some I've always been irondeficient, so it just give me some

(04:00):
iron. No, miss Johnson,we need you to come in. And
my doctor could not even look atme because he didn't even know how to
tell me. And he asked,he asked the question that is very stigmatic
and also very stereotypical of a wholelot of things, and he says,
do you do drugs? And Iasked him, why would you ask me
that, you know, type ofa situation. And that's when he told

(04:20):
me I was HIV positive and thatI needed to go to a specialist to
you know, to help not justwith my HIV but also to make sure,
you know, with my child aswell. And then what was like
that conversation like with your partner afteryou found out he blamed me. I'm
not even gonna lie. He toldme that it was all me and this

(04:41):
happened before them, and this thenthe third and I already knew that that
wasn't the case. But you know, hey, do your thing if that's
what's going to help you sleep atnight. But I know the truth,
and so I just went ahead andjust you know, just let it like
kind of like chuck off the water'sback. But it also gave me fuel
to leave. And so the onlyI kept thinking about was the health of
my child and how was I goingto be able to get out of this

(05:03):
situation. And that was the outto get me from Apostle, Texas back
to Virginia, was to make suremy child was safe during that time.
Yeah, I just wonder because youknow, as mothers, we go through
a lot of changes when we're pregnant, right, And I remember like all
the physical things that were going onright, What was different for you physically,
you know, dealing with the HIVdiagnosis and then going through your pregnancy

(05:28):
because I do, I have anolder side. My oldest is twenty six.
The only difference was having to takea manage something other than a prenato
pill. I can't really tell,Like, so folks have asked me like,
did you have symptoms? You know, did you react to the medication.
It's kind of hard because I wasalready nascism pregnant, you know,
going through all these crazy home owneswith crazy foods and all of that.

(05:50):
But I really don't know the differenceother than I knew that this was going
through my body. Other than that, so there really wasn't anything that was
different. If any piece that reallybothered me was more so how the physicians
and the healthcare professionals treated me andlike I was a science project or were
scared to touch me. I've neverhad a breast exam with gloves on,

(06:13):
so it was like that feeling ofyou're dirty, like you're not even worthy
of me touching you with my hands. When you can't touch my skin and
get HIV, you know, it'skind of thing. Can't hug me?
Or even give me a kiss andget HIV. So that was the hardest
part, especially when I moved backto Virginia, was you know, just
dealing with the way that I wasbeing treated. That was really made what

(06:38):
made me speak up because if theywould treat me that way, and I'll
mind you, I was a premed major in school. I was,
you know, the cool nerd andall that great stuff. If they're treating
me this way, imagine how they'retreating someone else that may not mate whatever
they may or may not have thatI do have, whether it's in my
privilege or without. Yeah, youbring up so many things. I'm like

(07:00):
blinking back tears because I know partsof your story, but I don't know
everything right. And I appreciate youjust being open and candid about this because
these are topics that we never reallyget to talk about, especially around how
stigmatizing HIV can be providing, especiallywith maternal healthcare. So I wanted to
kind of go back a little bitand just kind of touch base on as

(07:25):
you were going through your prenatal careand also parenting your older son, Like
how was those conversations with him tohelp him understand like the transitions that you
were going through with your pregnancy,but also with this new diagnosis. You
know, that's probably one of myfavorite questions, to be honest, Jay,

(07:46):
My oldest was four when I wasdiagnosed, and I remember when they
I was crying in the bed becauseyou know, just all the emotions of
It's one thing. You know,you're pregnant and you're raising a child,
but then when you're thinking of moretalent, you know your own mortality in
that moment, and you hear HIVin the stigma is you get it?
You die? That's it. It'sone or the other. That's it.

(08:07):
That's all. And so I'm like, I'm pregnant, I have these kids,
what is it gonna be? AndI'm going to this moment? And
I remember him reaching over and likehugging me in like some way, just
kind of touching me and saying,Mommy, it's gonna be okay. You're
not gonna die. You're gonna beokay. And so, even though they
didn't necessarily know fully what was goingon, and they would be they would

(08:28):
take I would always take the boatto my presentations because pregnant, I mean
pregnant and talking. So they wouldbe there but at the same time,
you know, knowing but not knowing. And what's so interesting. Zaban is
now twenty six, and honestly,we haven't fully had a conversation about my
HIV. It's more about I'm yourmom, you know, not even i'm

(08:50):
your mom. I'm more like asister because I'm like that cool mom.
But really, like, we've neverreally talked about it, and on some
levels, I want you, butthen on some levels I don't, Like,
I just want to be mom.Yeah, that's it.