‘It Wasn’t About What I Wanted’ The Consent Experiences of Women Living With Complex Social and Health Circumstances

Rebecca Brione, KCL.

‘Choice and consent’. These three words sit at the centre of a significant proportion of maternity policy and law. The concepts they represent – the idea of being offered genuine and rich choice in care, and the opportunity to give, or decline, meaningful permission over what happens to your body – are deceptively simple. Yet as Narratives of Consent and Reproductive Subjects: Tales of Invisibility shows, they seem hard, if not sometimes impossible, to achieve in practice. This holds true whichever lens you choose to use: that of people’s lived experiences, that of institutional structures, or that of policy and clinical practice.

My chapter in this volume takes the first lens, focussing on the intertwining experiences of two groups from whom choice and consent is withheld with particular frequency: people facing multiple disadvantage during their pregnancies and those with physical and sensory impairments. Drawing on two research projects carried out for the UK human rights charity Birthrights, it interrogates the way in which the very idea of consent can be concealed from birthing people by a straightforward failure to offer any choice at all, with those people with less knowledge of the system – particularly asylum seekers – railroaded through ‘care’ without even the pretence of choice. This is despite research which shows the particular valence of choice and consent as a means of operationalising control for those who have now, or historically, little control over other areas of their lives.

The chapter also describes the way that birthing people themselves are often seen as “walking, talking risk[s]”, rather than people with knowledge and experience that is vital in ensuring appropriate offers of care. For many women whose stories are represented in the chapter, a focus on their physicality, their very being, as a risk overrode any chance at respectful and meaningful engagement. In particular, disabled women’s specific knowledge of their health needs and how to meet them was frequently ignored, dismissed or distrusted, in a way that belies the Better Births mantra that safe care is personalised care.

My chapter’s third theme examines people’s experiences of being able to control their bodily integrity, with a particular focus on vaginal examinations as a notably intimate form of both physical ingress and interpersonal engagement, with the potential for multiple – including traumatic – meanings. It reveals that the ability to control such ingress is not equally distributed, and attempts to refuse unwanted examinations frequently fail in the absence of specialist midwifery care. The importance of being able to maintain bodily boundaries, especially for people with histories of objectification and trauma, cannot be overstated, and has a vital role in promoting birthing people’s holistic wellbeing.

The chapter closes with reflections on the parallels between the rhetorics of sexual and maternity consent, in a context which is all-too-easily objectifying. Rather than reiterating those arguments, I want here to comment briefly on two aspects of the narratives within the chapter which particularly struck me.

The first is the frequency with which circumscribed agency was described by birthing people with reference to an amorphous ‘they’, seemingly speaking both to the group of clinicians involved in an individual’s care, but also to the maternity system as a whole. Yuill et al describe an “explicit-implicit discourse of care” within maternity guidelines and policy, where choice is explicitly centred whilst implicitly agency is attributed to clinicians to offer a narrow and controlled version of ostensible choice. In my chapter, women report the clinicians having presented themselves as having limited agency in the face of clinical risk: “they have to induce me because they have to be on the safe side”. In the face of such limited representations of agency, refusal seems impossible.

Another is the question of whether, even in a book entitled Narratives of consent [etc], we are really asking the right question when we focus on consent. We assume that consent matters as a tool of enacting control and choice, and so it does, when offered in its full conceptual richness. However, for many of the people in my chapter, the idea of consenting didn’t even make it on to the table: alternatives, optionality, the possibility of refusal were all invisible. In such cases, we are surely really asking only about compliance. Real choice must be available, visible, and accessible. Only then can we engage fully with questions about how to realise morally and legally effective consent to any one particular choice. This chapter suggests we have a long way to go before we are even close to being there.