Below is a presentation by Alice Welbourn given on May 29th, 2013 at Women Deliver on a Panel hosted by the H4+, in support of the global initiative Every Woman, Every Child, and the Inter-agency Task Team on the Prevention and Treatment of HIV Infection among Pregnant Women, Mothers and Children.
I have been asked to suggest how we constructively engage women in Maternal Newborn and Child Health (MNCH) issues as “more than patients,” so I have come up with six suggested steps that we might all take together to achieve success.
My first suggested step is that we keep things simple. We all have really complex lives and simplicity is always welcome! Here are some examples of how to keep things simple.
Firstly, language. As I have explained elsewhere, we know now from recent scientific research that use of positive language actually makes us feel good because of increased oxytocin and serotonin levels in our bodies. It also enables us to use our right brains more. Left brains are great for doing things to do with engineering or medicine. But when it comes to the socio-political dimensions of health, which as Kate Gilmore just explained is what we are talking about here, it is really useful for us to enlist the support of our right brains, where creative thinking and the development of “out of the box” positive future possibilities resides. It’s also a good idea, wherever possible, to use clear language. One medical doctor I know asked me what “MNCH” is—and if these letters were even a problem for her, then it goes to show how much we need to think about use of everyday language wherever possible, so as not to make people feel alienated.
Sex. Abortion. Parenthood. Power.
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Next, I suggest that we offer dual protection (for example, protection against unplanned pregnancies and against sexually transmitted infection [STI] transmission) to all women and children, irrespective of their HIV status. I suggest this especially because we have heard from colleagues in this region, for instance, that women with HIV are only offered condoms at health centers and no other contraceptive, on the basis that they shouldn’t be having sex anyway, let alone daring to think of having children. Yet as we all know, it is now possible for women with HIV to have 99 percent HIV-free babies through normal vaginal delivery, so this practice is unjust and unscientific. We all know how much health workers are held in esteem in their communities. So just imagine if all health staff treated all women and girls equally, regardless of our status. That would send out such a powerful message to the communities where they work.
My third suggestion is that we make all services available, affordable, acceptable, and accessible to women and girls. Let’s make services fit for people instead of going on expecting people to fit into services. Like Cinderella and the glass slipper, we all need to think about putting our feet in the shoes, or the sandals—or even the bare footprints—of women and girls whom we are wanting to use the services. Anyone wanting to support women and girls needs to ensure that they entirely understand things from their perspective if they hope to have any success. Of course the best way to do this is to involve women and girls in the design, planning, implementation, and monitoring and evaluation of services and related advocacy work. Everyone who is really involved in something wants to see it being successful.
My fourth suggestion for keeping things simple is for us to talk about “women” and “girls” instead of “patients” and “mothers.” Why is it that we keep defining our gender with labels that associate us with other people or contexts? As appendages to other priorities? Let’s just stick to women and girls whenever we can, so we are defined in our own rights rather than in relation to others.
My second suggested step is about safety.
The World Health Organization (WHO) tells us that pregnancy alone can lead to gender-based violence (GBV) for some, especially if the pregnancy is unplanned.
We also know very clearly now that GBV can increase women’s vulnerability to HIV and that—conversely—an HIV diagnosis can provoke or exacerbate GBV.
It is also clear to any who have experienced GBV that fear of violence is as big as actual violence—and the emotional and psychological effects of violence or fear of violence can last years after the actual physical signs may have faded away. This is being borne out in recent research by the London School of Hygiene and Tropical Medicine.
There is a wonderful website and book called Why Love Matters by Sue Gerhardt, who explains very compassionately how critically important it is to a baby’s well-being that she or his mother is psychologically and emotionally healthy, while the child is in the womb and in the first hours, days, and weeks of the child’s birth. I use the term “mother” here advisedly, in the context of this strong mother/child dyad and in recognizing the critical importance of this primal bond between a woman and her baby in these early stages of the child’s life. If this bond is damaged in any way, it can have far-reaching effects on the child’s development, which can carry on into adulthood. So even if anyone felt that they had no interest in a woman’s health in her own right, surely they ought to be concerned, for the baby’s health, to ensure that we all support the development of that bond as best we can.
So it is clear, surely, that a healthy baby needs a healthy mother. So let’s make sure that we make this happen.
We need to ensure psychological, physical, and sexual safety for all women and girls at all times.
And we need institutional care and safety for all women at all times. We need to ensure that every woman knows that whenever she goes near a health center she will be guaranteed confidentiality, support, dignity, and respect.
For my third step, let’s talk about sex! I know it’s early in the morning, but the “s word” is so missing from the conversation. When I last looked, I believe that a good 99 percent of people around the world—and probably most of us in this room—are here because two people somewhere had sex. Yet this is still such a huge taboo subject.
Negotiating when, where, how, with whom we have sex, with safety and—heaven forbid, with pleasure—is way out of the reach of so many women and girls around the world.
This must change.
Of course all of us women and girls need information, education, skills, and consent.
And surely we all need to have our rights to bodily autonomy upheld, as Kate Gilmore was explaining.
What I find quite strange about this Women Deliver conference is that in all the sessions I have gone to, I have heard very little mention of Millennium Development Goal 3. Yet surely MDG 3 is critical to achieving all the MDGs? Why is MDG 3 missing from the debate? I am not aware that we have achieved it. I really believe that we all need to be ensuring that we include MDG 3 in all our debates both now and beyond 2015.
And my last point in relation to sex is that sexual and reproductive health and rights (SRHR) of women and girls, in all our diversities, and the MNCH agenda are inseparable. Indeed I would say that the MNCH agenda is a sub-set of the SRHR agenda. We can only achieve effective and successful MNCH if we set it within the wider enabling environment of comprehensive SRHR for us all.
My fourth step is about support.
We women “do” peer support really well. I was talking to a senior bank executive a few years ago and he said that if you tell a man something he tells no one and keeps it to himself. Whereas if you tell a woman something and she thinks it’s a good idea, she shares it with an average of seven girlfriends.
You may all laugh—but the advertising world knows this all too well and they target their advertising accordingly.
Our peer support skills are a vast unrecognized, invisible, unpaid, and still largely untapped resource around the world.
Yet as soon as we sense that there are women or sex “out of place,” this mutual support system unravels, like knitting wool from a snag in a jumper. Renowned anthropologist Mary Douglas, in her book Purity and Danger, talked about “matter out of place” causing discomfort and distress in many societies. In this way, “women out of place” or “sex out of place” causes us all to put up barriers and distance ourselves from those who somehow rock the status quo.
So whether it’s about teen pregnancy, unmarried sex, rape, HIV, having a(nother) sexually transmitted infection, being lesbian, bisexual, trans or inter-sex, abortion, divorce, sex work, widowhood, contraception, being incarcerated, or using illicit drugs, we are all conditioned, as women, to categorize, label, and blame and exclude each other. We don’t use the same strictures on judging men in our societies. Yet once we have labelled all the women we know on the basis of the above list, who of us has many female friends or even acquaintances left?
This is because of the patriarchal attitudes with which we have all been raised in our many societies around the world. Such attitudes damage men as well as women. They are harmful to us all.
As a little aside here, I recently read a wonderful book produced by young lesbian, gay and bisexual leaders from Toronto. Many of them described the self-loathing and self-hatred they experienced and had to work through whilst growing up, as they came to terms with realizing that their own sexual orientation was not the mainstream accepted heteronormative version of how they “should” be. These experiences resonated so strongly for me with my own experience of learning about my own HIV status, despite my having been involved already in HIV prevention education. I know many women with HIV also experienced similar depths of despair and self-hatred when they were first diagnosed. This is so very sad—and telling—that any of us who steps outside the “norms” of what our patriarchal societies expect of us experience this. It also goes to show how very deeply embedded are these attitudes within us, even without our often realizing this.
It is time therefore to challenge and transform our language, attitudes, and practices, so that we may join together again to overcome these patriarchal attitudes and regain the solidarity of our peer support structures, irrespective of our diverse identities.
My sixth step is an “s” with a line through it. In fact several of them.
Many governments assume that they are “doing gender” when they fund MNCH services. However, all too often, MNCH services are about perpetuating women’s wrongs rather than promoting women’s rights. The experiences of many women with HIV in many parts of the world at the hands of health workers is frankly appalling. They experience scolding, abuse, and even coerced sterilization. Here in Asia, the latter has taken place in Indonesia and Papua New Guinea. It’s also been happening in Southern and East Africa, in Chile—and in Europe, it happens to Roma women, so I think coerced sterilization takes place in all regions of the world.
We are not baby factories or disease vectors. We are women and girls, in all our diversities, with our own rights and, as Kate Gilmore so clearly explained, states are duty bearers to provide us services to fit our needs.
And as Kate also explained, we have the rights to remedy, reparation, and redress where these services are not available or where they are abusive.
There are also patriarchal issues at play here. There is a just-published book called The Perfect Storm, edited by Tina Wallace and Fenella Porter, about the current “results-based” aid agenda of donors and policy makers and the damaging effects that this is having on women’s rights and lives around the world. As one of the authors in this great collection states, “[T]hey may be hitting the target—but are they missing the point?”
Yet it is impossible to promote remedy, reparation, or redress without funding for our women’s rights work. You can only do so much on a voluntary basis. We need funding for women’s rights work—and for promotion and roll-out of gender-transformative practices.
These practices are there—indeed several of them have been created by us women living with HIV. But without funding we cannot spread them further or share them with others.
We need solid, stable, sustained funding to ensure our informed choice, consent, and agency. And our right to agency—our right to engage in participation and in political acts—is also enshrined in our human rights.
So my final step is success.
Success is a win-win ticket—it can make the life and work of health workers happier and more satisfactory, it can make our own lives as women and girls better, and it can increase the wealth of the nation if we are all happy, healthy, and safe.
We can all engage as individual women and girls in all our diversities.
We can engage in and through our peer support groups.
We can engage in and through our communities.
And our health staff, the United Nations, and our governments can—and must—engage with us also. These entities exist through us, the taxpayers. They need to be accountable to us.
So let’s all start to measure governments’ results and success in terms of their track record on women’s and girls’ sexual and reproductive health and rights. That would be a real measure of success.