As part of a larger, mixed-methods research project, Saara
Greene of McMaster University conducted interviews with 33 women during their
third trimester of pregnancy and three months after giving birth. One woman commented:
“When people hear that you are HIV positive
they automatically think, ok, you shouldn’t be having babies.”
One of the interviewees was diagnosed during her first pregnancy
and was very conscious of the large number of healthcare professionals who quickly became
aware of her status:
everything out…it changed my whole pregnancy cause I had to get monitored more
and then...when you go into the hospital there’s always a random person that’s
checking your file so it’s like everyday you are, like, melting cause you’re
like, Oh God!, one more person has seen that.”
Moreover, the extra monitoring made her feel that she was treated "differently" to other mothers in her community.
interviewee felt that generally she lived a "normal" life and HIV was not part
of her identity. However, the extra attention during pregnancy made her feel that HIV
had “become who I was”, and this raised questions about whether she would want
to become pregnant again.
During the first few months of a baby’s life, the medical surveillance
overlapped with scrutiny from family and friends, especially in
relation to infant feeding choices.
kept asking me, she had asked me on the phone if I’m breastfeeding, I told her,
yes, I was breastfeeding…She came and asked me again, I was going to get upset,
but I just didn’t want any misunderstanding, like, why will you keep asking me
this same question?”
Greene noted that women of all ethnicities – not just African women –
were under pressure from peers to breastfeed. As they felt they could not, women
generally felt a sense of loss.
“I go to
church every Sunday…If I go now and she’s struggling with the bottle…They will
be asking me to breastfeed her and I don’t want to be lying…I’ll tell them that
I don’t breastfeed in the day…God forgive me, I don’t like lying, but I don’t
want to start explaining too many things.”
Women feared that the questioning of their feeding choices could lead
to their HIV status being revealed. As was also
found in research conducted in London, some women
isolated themselves and avoided social contact because of this.
Family and friends pressured women to breastfeed, while health
professionals insisted on formula feeding. While women struggled to balance
competing demands, fears about the criminalisation of HIV transmission
inhibited them from discussing difficulties with healthcare providers.
Around a quarter of the respondents were involved with child-protection
officials. Their intervention could potentially lead to a mother losing custody
of her child. Women had to document and justify their personal choices.
“I went right away to the doctor and got
referred and went through the whole process, everything was fine, the doctor
was completely happy I did everything on time and started my medication on time
and my virals were low and just to be safe for the baby, you know, I have to
take the medication so I’ve done everything I had to, but the Children’s Aid
Society is, like, you should have started it in [sooner]... so I gave them all
of the dates...and they are still using it against me.”
For Saara Greene, this surveillance results in mothers having their authority challenged,
undermined or taken away. She called for moving away from a state of “social surveillance, monitoring,
interrogation and criminalisation of HIV-positive mothers” to a situation in
which mothering with HIV is normalised, accepted, and left alone.