Dr Beverley Clough, Birthrights Associate Trainer and Associate Professor in Law & Social Justice at the University of Leeds, reflects on Pride Disability Month and rights-based maternity care for disabled women and birthing people.
Disability Pride Month serves as an important moment to reflect on where we are in terms of rights-based maternity care for disabled people. Through my research and teaching on health care law and disability, it is often clear that disabled women and birthing people have adverse experiences of maternity care. Common issues highlighted in research in this area include negative attitudes towards disability, lack of reasonable adjustments, and a lack of choice and control over decision making. It is important then to reflect on ways that these experiences can be improved, and how reproductive rights can be realised for disabled people.
The social model of disability offers a powerful way to understand disability and to challenge established ways of thinking in maternity care. Rather than seeing disability as an individual or medical impairment, the social model of disability emphasises the role of society in creating and sustaining barriers. The most common illustration of this is the way that the use of stairs can be a barrier to many people with physical impairments. Societal changes such as ramps and lifts can remove this barrier. However, in reality things are much more complex than this, and the societal barriers in maternity care encompass things like discriminatory attitudes, accessibility problems, and practices that are built on non-disabled norms.
This social model is central to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which the UK has signed and ratified. This means that the UK government agrees to promote and protect the rights of disabled people that are enshrined in the Convention. Many of these are relevant to maternity care, covering for example:
- Equality and non-discrimination (Article 5)
- Empowerment of women with disabilities (Article 6)
- Equal recognition before the law, and support for decision making (Article 12)
- Protecting the physical and mental integrity of the person (Article 17)
- Respect for home and family, including reproductive and family planning (Article 23)
- Health, including access on the same basis as others, and based on free and informed consent (Article 25)
A commitment to rights-based practice and challenging societal and structural barriers can have a transformative impact on maternity care and the experiences of disabled people. It calls for acknowledging and putting into practice choice and control for disabled women and birthing people, recognising that this may need to be tailored to their own unique experiences of impairment. This may require reasonable adjustments, for example by providing information in an accessible format (such as EasyRead, braille or audio) and having longer or more frequent appointments to give the time to ensure information is understood and to enable meaningful consent. One of the things that I frequently encounter in my research in the context of mental capacity is assumptions being made about capacity based on the existence of a learning disability, however the Mental Capacity Act 2005 emphasises that ‘a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success’ (section 1(3)). Providing information in an accessible format and supporting people to understand information about pregnancy and birth options at an early stage can enable people to make their own decisions and exercise choice and control.
Birth planning is rightly recognised as an important enabler of choice and control in maternity care. For disabled people, this can be a crucial moment where practical support to ensure accessibility can be flagged up. Physical adjustments to birth spaces can be relatively simple and easy to make, however opportunities to put things into practice (such as ensuring space for wheelchairs and other assistive devices) often come very late. This is something that Dr Marie Tidball highlights when reflecting on her own birth experience, where discussions about the impact on her birth plan of her mobility impairment were only discussed the day before induction.
Recognising, understanding and dismantling societal and structural barriers is an important step in enabling rights based, positive experiences of maternity care for disabled people. Yet, this must be informed by the voices and experiences of disabled people. Remarkably, there is currently very little research that centralises the voice and experiences of disabled people, with this study commissioned by Birthrights being a notable exception. It is through hearing these voices and the stories of both positive and negative experiences, and making disabled people visible in maternity care, that assumptions and discriminatory attitudes can be meaningfully challenged. As a new Associate Trainer for Birthrights, I am looking forward to playing a part in increasing engagement with disability as part of everyday practices which can facilitate positive experiences of maternity care.
Are you pregnant and have a disability or a long-term health condition?
Human rights law and equality law give you rights to additional support during pregnancy and childbirth if you are disabled.
Do you work with pregnant women and birthing people?
Our training equips doctors, midwives and other birth workers with knowledge of the law and human rights principles, an understanding of how to apply it in practice, and the ability to communicate effectively with women and birthing people in a way that upholds their human rights. We offer a 10% discount to multidisciplinary teams.
Need advice about your maternity care?
Knowing your rights and the law in pregnancy and childbirth is important. If you have are pregnant or recently given birth and need advice on any aspect of your care, please contact our advice team.
Our free factsheets provide you with the latest information on your rights, where they come from in law, and how they are backed up in guidance.
Birthrights is the UK charity that champions respectful maternity care by protecting human rights. We provide advice and legal information to women and birthing people, train healthcare professionals to deliver rights-respecting care and campaign to change maternity policy and systems.