March 8th marks International Women’s Day – a global day celebrating the social, economic, cultural and political achievements of women. This year, the theme calls for collective action in accelerating women’s equality; action urgently needed to improve access to gynaecological, obstetric, maternity and post-natal care pathways for mothers with disabilities, something I experienced first-hand as an expectant mother with a disability.
The United Kingdom ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2009. In addition to articles on equality and non-discrimination of people with disabilities (see Article 5), UNCRPD also contains relevant provisions on women with disabilities (Article 6), health (Article 25), integrity (Article 17) and respect for home and the family (Article 23). In 2017, the United Nations Committee on the Rights of Persons with Disabilities raised concerns in their Concluding Observations on the initial report of the United Kingdom that ‘the rights of women and girls with disabilities have not been systematically mainstreamed into both the gender equality and disability agenda’. Their report documented ‘limited access’ to gynaecologists and obstetricians, recorded ‘[m]ultiple barriers to access to sexual and reproductive health-care services’ for women and girls with disabilities, and referred to ‘insufficient information and education on family planning in accessible formats for persons with disabilities’.
This is contrary to the UNCRPD Committee’s General Comment No. 3 (2016), which says that States parties must address multiple and intersectional discrimination against persons with disabilities. Lack of access to sexual and reproductive health information for women with disabilities is provided as an example of such discrimination.
When I became pregnant with my first child in late 2017, I was aware of the UN’s Concluding Observations. However, whilst I had wonderful care from individual professionals, I did not expect to experience barriers along the maternal healthcare pathway myself, as an expectant mother with a physical disability.
Although there were local specialist midwifery teams to support mothers with drug and alcohol issues and the Silver Stars team – for women with medical conditions such as high blood pressure and kidney problems – there was no specialist service for mothers with long-term physical disabilities. So, whilst I was quickly triaged to the Genetic Counselling service (which I politely declined), it took until the day before my induction to have an appointment with the Consultant Midwife about how my mobility impairment would affect my birth plan.
My experiences, which I turned into a case study for a seminar on Disability, Health and Human Rights, overlap with evidence in the large scale quantitative research by Malouf, Henderson and Renshaw (2019) on Access and quality of maternity care for disabled women during pregnancy, birth and the postnatal period. They found gaps in maternity care and reported that ‘[w]omen from all disability groups wanted more postnatal contacts and help with infant feeding’. According to the Report, babies born to mothers with disabilities ‘were significantly less likely to be breast-fed at the time of hospital discharge compared with non-disabled women’. These findings were echoed in my own experience: despite a referral from my midwife, the adult social care follow-up was non-existent; neither the maternity ward specialist breastfeeding support advisor, nor the disability occupational therapy team were able to adapt other feeding positions for me to breastfeed my baby outside the home.
It is over a decade since the UK ratified the UNCRPD; now is the time for decisive action to provide more inclusive health services for women and girls with disabilities. Yet, the Government’s recent Policy Paper, Disabled people’s rights: the UK’s 2019 report on select recommendations of the UN periodic review, makes no mention of the recommendations relating to women and girls, the health inequalities they face, nor the continued inaccessibility of sexual, reproductive, gynaecological or maternity services. The UN’s Concluding Observations create a moral and legal imperative to improve policymaking and implementation of the UNCRPD across maternity and postnatal services. Collective action to accelerate improvements in this area should be taken by the Equality and Human Rights Commission and the Women and Equalities Select Committee to ensure that the Government implements the UN Committee’s recommendations to ‘develop a targeted, measurable and financed plan of action aiming at eliminating barriers in access to health care and services’ in this area and to ‘ensure equal access to sexual and reproductive health-care services’.
Featured image credit: Tom Tidball.