Social identity, belonging, stigma and discrimination

In this section, we will cover:

  • Working around multiple social and cultural expectations of infant feeding
  • Experiences of discrimination in medical settings
  • Coping with society’s HIV stigma

This section looks at how different aspects of one’s identity can affect experiences of motherhood and infant feeding. The majority of the women we spoke to were born outside the UK and were Black African, while the rest identified as White, Asian, Black Caribbean or Black British. Women reflected on the many ways in which their ethnicity and HIV status shaped their behaviours, concerns, decision-making and the care that they received, in both their public and personal lives.

According to the Cambridge dictionary, ‘stereotyping’ is to have a set idea about what a particular type of person, or group of persons, are like, especially an idea that is wrong. Stereotypes are often negative and may be based on a person’s identity. For example, in multi-racial societies, there may be assumptions about what a person is capable of based on their race. Another closely related term is ‘stigma’, which can be defined as a strong lack of respect for a person or a group of people or a bad opinion of them because they have done something society does not approve of. For example, ‘HIV stigma’ is a set of negative beliefs about people with HIV. People living with HIV are often deeply affected by stereotypes and HIV stigma, and many may choose to keep their HIV diagnosis a secret.

In the UK, the Equality Act 2010 is a law that protects people from being discriminated against because of their disability, age, race, sex, gender or gender identity, religion or belief, sexual orientation, pregnancy status or maternity. These are known as protected characteristics. People with HIV are protected under these disability characteristics.

Working around multiple social and cultural expectations of infant feeding

The UK has one of the lowest breastfeeding rates in the world. In maternity units across the UK’s NHS, there is widespread encouragement of breastfeeding, and some hospitals might also include dedicated breastfeeding support staff who help new mothers to breastfeed. However, for those living with HIV, the situation is very different as they are encouraged to formula feed (please see other sections on the site such as, having conversations with HIV clinicians, non-HIV medical staff, views about the BHIVA guidelines and choosing between breastfeeding and formula feeding).

Marella and Marcy (both of Black African heritage) believed that Black people were more “accepting” of breastfeeding. But this also means that if a Black mother is not breastfeeding, they are much more likely to be questioned by family members and friends, in comparison to White mothers.

Marella believed that some Black cultures are more accepting of breastfeeding so there is a greater expectation to breastfeed if you are Black.

So, for example, if you’re in a café and you produce your breast to feed your child, you’re more likely to get  discerning looks from, I don’t know, elderly white woman or an elderly white man or a white woman or white, it seems to be the people that complain are those from white communities, because I feel that in the black community breastfeeding is seen as such a natural thing like I’ve been to so many functions or barbecues, I know we had all these barbecues are occurring during lockdown, but when we were allowed to go to barbecues [laughs]. It was so natural to be, I don't know, in the living room and my aunty just breastfeeding her child or a cousin breastfeeding like it just seems I grew up and that was the way it was. When I went, when I was a family in Zimbabwe, like it was so normal to be at a restaurant and a mum will just breastfeed her child or she’s in the car just breastfeeding.

It was, so, there wasn’t all these contraptions to sort of put round your neck and hide round the baby and tuck the baby in. It seemed like a very western issue that we have with breastfeeding. So, I think when, you know, black relatives perhaps especially older black relatives see you not breastfeeding your child that they find it very difficult to sort of comprehend because I guess we don’t have the same shame in terms of, but you could breastfeed it. We are all women in this room. We are all having a meal and that’s fine. So what could be the reason that you wouldn't be breastfeeding?

‘Cos it’s not because you’re embarrassed. It’s not because it’s not natural. There must be and if it’s something, if it’s because you can’t as in because you’re having pain or because you know the baby isn’t latching, “Let me show you”, you know. A black woman want to support each other and help you to do that. But I guess from that, I guess it can also become a very point of, if I don’t want to I think that they’re the first to offer or to offer assistance, but there’s a catch 22 there’s the support is there in terms of being able to and be free to do so. At the same time you’ve got that difficulty that if you don’t want to it’s very noticed very quickly. Yeah. And I think as a white woman, if you’re not breastfeeding and I’ve seen it myself when I’ve gone out in groups of white women who are, you know, we’re all, we’ve all got our babies and if you ask people how they’re feeding their child or if it comes up how are you feeding your child, if you say, just didn’t work out for me, case is dropped. No-one will ask.

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In cultures where breastfeeding is the norm, formula feeding can sometimes signal a combination of one or more issues at play – such as a need for extra support, or that the mother has a health condition (including having HIV). If the mother wishes to keep their HIV status private, formula feeding can be an extra source of stress. Amy is White British, and her partner is Black; she recalled her partner’s family asking why she was not breastfeeding. Pauline, a Black woman of west African heritage, talked about the burden of having to “educate people” from her community, and even her own mother, that it was okay to not breastfeed her baby. As Nozipho (originally from Southern Africa) describes below, there may be a generational aspect to this.

Nozipho is of African descent, but said that being younger means she was not expected to breastfeed and that she knows young Black women who formula fed.

I mean, I think our generation is quite different as well in terms of breastfeeding because I’ve got friends that choose not to breastfeed. Not because of anything, it’s just their choice. They don’t feel comfortable with it or you know, yeah.

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Emily and Camille, both Black women of west African heritage, felt they have had fewer visitors than they would have had in their country of origin, and were therefore relieved not to have people questioning their formula feeding choice. April (east African) worried that she would be asked why she was not breastfeeding and said she goes out less to avoid those questions.

This was also the case for South Asian women, such as Amina and Maria, who also felt a cultural expectation to breastfeed. In contrast, Sinead and few other White women we spoke with sometimes wondered if they were being judged for not breastfeeding, but they did not feel under any social pressure to explain their choices. Although we made some broad observations about breastfeeding being more normalised in women from ethnic minority groups compared to White women, we did have some exceptions who did not fit this pattern. Also, it is important to note that ultimately the decisions around infant feeding were made by women based on the particular details of their situation, including personal preference, the type of support they had, their level of autonomy and independence, and the quality and depth of information they had received about the pros and cons of either choice.

Experiences of discrimination in medical settings

We talked with women about their interactions with medical staff, including their HIV specialist team, maternity services and non-HIV specialist clinicians. Veronica, Nozipho and Biola, all Black women, felt well supported by their medical teams and never felt there was any discrimination. Interestingly, Rachel (west African descent) wondered if women with HIV going through pregnancy and childbirth might receive better care than those without HIV, as they are cared for by HIV specialists alongside their maternity team.

Rachel discussed how she received specialist care as a woman living with HIV.

Really no one has ever treated me differently. I can’t lie about that. No one, no healthcare worker around here has ever treated me differently. No one really. The only thing that when you have that, when you are pregnant with that type of condition, you have your doctor to look after you, you have a special doctor for that and a specialists for women that are living with it that are pregnant.

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Unfortunately, not all women felt so lucky. Amy and Sinead, both White women, felt they received poor medical care because of their ethnicity, cultural stereotypes and stigma. Both were diagnosed several years after they started showing symptoms of HIV, despite going to their GP regularly. They believe that their HIV diagnosis was delayed because they are White women, and therefore not seen to be at risk of HIV. When Amy (White British) was on the maternity ward, she felt she lost her “respect and autonomy” and was discriminated against because of her HIV status when medical staff asked her ‘inappropriate’ and ‘intrusive’ questions about her diagnosis. Both Amy and Emma thought that medical staff assumed they were sex workers. Holly (White British) also felt that being White meant medical teams responded to her strangely and could not ‘compute’ her HIV status, she also said that one staff member ‘grimaced’ each time she said ‘HIV’.

Lana’s GP incorrectly told her that she would have to tell her work about her diagnosis and threatened breech her confidentiality is she did not.

Well, I think so because there was something that happened between my GP and I think I went to the hospital and my GP said, “Oh because you’re a nurse your line manager needs to know your status because we need to protect the patient from you.” And I was like, “Hold on a minute, that is none of your business and it’s none of my line manager’s business.” That lies with Occupational Health, and she went, “Well she needs to inform my GP,” and I was like, “You are digging into my privacy, and I wouldn’t take it up,” so when I called my team looking after me, they said, “She has breached confidentially. It’s not in her power to do so.” So and I said I wanted to know how the matter ended. No-one contacted me to say because the GP, is an Indian and before then I’ve had a chat with occupational team, occupational health, and they told me, “It’s none of my line manager’s business to know,” that a lot of people have different ailments. What is important is that I look after myself,” and so, so and the GP says, “No your line manager must know because they need to protect the patients from you.” So, this is some of the things that they make me think that there is more to the way I’m being treated given my ethnic background because I doubt she would treat a white person that way.

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Lana (west African heritage) and Puleng (southern African heritage), recalled facing racism during their maternity care. For example, Lana said her HIV doctors were reluctant to discuss the national infant feeding guidelines with her and undermined her desire to breastfeed. Puleng described feeling bullied and silenced during childbirth, with nobody speaking up for her.

Lana asked questions about the guidelines but got few answers. Pregnant at the time, Lana felt like her HIV clinicians judged her as incapable of understanding research because she is Black.

I said, “So, why are them examples so concerned of the social aspects?’ What about the physiological aspect of it? Why are they so narrowed down? Why is not being talked about?’ And that’s the few questions I’ve asked them and clearly no-one, no-one at all has answers because I even asked one of the doctors, “Even this breastmilk can be analysed in the laboratory. Do we have any laboratory studies?” Just like we analyse blood samples that analyse human milk from affected mothers, even mothers who have high viral load are compared with women who have low viral, undetectable viral load. What’s the difference?” and the doctor said, Oh he hasn’t researched to see if there are laboratory studies done, and I was like, ‘okay so the information you provided where did it coming from?’

They said, “It was guideline.” I was like, “What is the guideline based on? What informs the guideline?”

And what answers did you get?

They didn’t give me answer, you know, I think like I said maybe because I’m a black person they don’t understand that I have research understanding, I have understanding of how some of these things work. Most policies are informed by research and research can be outdated after some time when we have new knowledge and if there is no new knowledge you know you’re interpreting the old knowledge with caution. Maybe something may have changed so when I ask them questions, they treat it like, “Oh she doesn’t have enough knowledge, or she may not understand.”

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Sasha (who is White British) recalled her doctor suggesting she be sterilised after she gave birth the second time, and wonders if that is because of her HIV status. LeaSuwanna (who is Black Caribbean) had to advocate for herself when she was turned away from an appointment with a midwife who wrongly thought her antenatal blood tests had to take place at her HIV clinic.

Some Black women felt worried about research that shows higher rates of maternal death among Black women in the UK (compared to White women).

Nozipho did not feel discriminated against, but she did worry about the increased risk of maternal death in Black women.

Because of Covid to be fair like you don’t see a lot of things because they want you out of the hospital [laughs]. No, no I’m not going to lie, I didn’t feel any, I didn’t notice anything. But I was scared, because when I was pregnant, not sure if you’re aware there’s two girls that died like this popular Youtuber and there was this whole thing, “Oh they don’t treat black people right and blah blah.” So I, it, I’d be lying like it was in my mind so I remember when I had my C-section and I didn’t want to close my eyes because I thought I was going to die. Not because of anything, it’s nothing to do with. I didn’t feel any, any difference, no.

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Coping with society’s HIV stigma

There are many resources available to support people facing HIV stigma and discrimination. Becoming a mother can be an emotionally and physically stressful time, whether you have HIV or not. The women we spoke with discussed how they tried to balance their needs for help and support, with the need to protect themselves from HIV stigma. This was easier for Marella, LeaSuwanna and Sasha, whose loved ones and colleagues know their HIV status, and who felt loved and supported. Holly and Tina had chosen only to tell close family and friends about their HIV status.

Camille and Emma had only told their husbands about their HIV status. However, their husbands had betrayed their trust, saying unpleasant things to them and also telling their friends about it. Camille’s husband had threatened to tell her son. Emma’s ex-husband told people about her HIV status, despite having HIV himself.

Women described how HIV stigma stopped them from seeking support from the very people who they were closest to. Pauline even felt unable to tell her mum, because of negative comments and Joyce was shocked at her friend’s stigmatising views about people with HIV. Danai did tell her family but then faced their negative reactions. She was not prepared to share her HIV status with friends.

Pauline shared how HIV stigma has stopped her from telling her parents about her status.

It’s because of the stigma, it’s because of the stigma around it yeah. I tried explaining to my mum that it’s not as bad as they think it is and her comments about it made me not tell her about my status, yeah, she made a really bad comment and like don’t say that, yeah.

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A few women, such as Sinead, Eriife and Nozipho, told us that they avoided HIV support groups in case they saw someone they knew. For example, Eriife would like to connect with others living with HIV, but her mother (who also has HIV) does not want her to go in case someone recognised her.

Eriife was born with HIV and shared that her mum was worried about her going to a support group.

I really wanted to go to this HIV charity. I really wanted to join them when I got diagnosed but I got stopped by my mum because she knew, “if you meet somebody you know there, what if, what if?” I’ve kind of got over that because now I’m an adult I’m like, I’m an adult and mother, okay.

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Sherry talked about feeling lonely and her worries that she would not be able to have a partner because of her HIV status.

Negative reactions or fear of experiencing negative reactions also impact how a person living with HIV feels about themselves, impacting their self-esteem. This is known as self-stigma. These feelings of self-stigma maybe become more pronounced during motherhood, with some women feeling like they have put their children’s health at risk because of HIV. Rachel felt that it was her “fault” that she was unable to breastfeed her baby and was aware of the assumptions about her moral character that people might make.

Rachel felt it was her fault that she couldn’t breastfeed her baby, and was also aware how mothers in this position maybe judged by those around them.

Because it’s really bad for us having babies and they’re not having breast milk but for me, I look at it that this is all my fault and has nothing to do with my baby. It’s something that I’m guilty of. It’s something that I’ve put my baby through and for me, it’s not something that I have on purpose that I did it on purpose, sometimes you can just have a one night stand. Sometimes you can just you could, there are things can really happen. It’s not just through sex it can happen. You can have it in different ways. So it’s something that you can’t, it’s just like flu when you don’t know where you caught it from and that kind of thing.

So it’s really, really sad for them, for the babies as well and for mums as well when people want to stigmatise with that, “You want to have sex, you want to be sleeping around, that’s why you don’t want to breast feed your child.”

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