Barriers to motherhood

Hazel McFarlane, Research fellow, Strathclyde Centre for Disability Research, University of Glasgow, UK, summarises the findings of her PhD research about disabled women and barriers to motherhood.

In April 2002, I began looking for women resident in the Glasgow and Edinburgh areas to take part in my PhD research about disabled women and barriers to motherhood. Prompted by my own experiences of disability, pregnancy and early motherhood, when I found my ability to care for my child being questioned by health professionals, I was driven to find out if other disabled women shared similar experiences. I completed my PhD in January 2005 and would like to share some of the findings, focusing on access to services.

Twenty seven disabled women from diverse backgrounds, aged between 26 and 66, took part in the study. Seventeen of the women had children, aged from four to 45. Ten of the women did not have children at the time they took part in the research.

Expectations

Almost all the women mentioned being conscious of a lack of parental, familial or professional expectations of their future social roles. Few had this directly communicated to them, so it remained unspoken. The non-mention of sex education, intimate relationships, marriage or parenthood conveyed a clear message of presumed asexuality. As girls, they were not encouraged to think of themselves as sexual beings, potential partners or mothers. This is highlighted by Beth (aged 39):

"I wouldn't get married, I wouldn't have relationships and I certainly would never be a mother - that's the sort of message that you got - and sex, but disabled people don't have sex [laughs]."

As teenagers, two of the women, convinced of their inability to have children, their beliefs compounded by insufficient sex education, did not use contraception and became pregnant.

A few of the younger women who would like to have children noted that finding a partner in the first place was problematic, with opportunities to meet potential partners restricted by the inaccessible nature of public transport and the social scene. The majority of women over 35 years old were either in a relationship or had been previously.

Access to services

The societal lack of expectation of disabled women's participation in sexually active intimate relationships, childbearing and child-rearing, is illustrated in the way related services do not include or accommodate disabled women's access requirements.

Most of the women interviewed had experienced difficulties accessing sexual health and family planning services, with clinics located in inaccessible premises. Visually impaired women found it particularly difficult to gain information about sexual health, family planning, contraception, pregnancy, birth and child-rearing in accessible formats, making it impossible for some to make informed choices.

Most of the women who had children had experienced services such as IVF clinics, maternity environments, antenatal/postnatal wards, and baby clinics as physically and attitudinally hostile. In maternity environments, women often found basic facilities such as showers, toilets and baths inaccessible. Even when they had communicated their access requirements in advance, these were not met.

Similar to my own experience, a significant proportion of the women who participated felt their mothering capabilities questioned and monitored by health professionals. Fear of their children being removed from their care prevented some women from seeking or using support services.

Women who required assistance in their parenting role were offered home helps by social services. In all cases, this assistance was inappropriate as the home help service is geared towards meeting the needs of older people. In order to gain the support they required, some women resorted to privately funded arrangements.

Where women used direct payments and personal assistants to live independently, the arrival of a new baby, and subsequent necessary changes to support arrangements, were experienced as problematic and stressful.

A significant number of the women who participated in this study had encountered medical professionals who advised them to terminate their much-wanted pregnancies or suggested sterilisation as a means of controlling their future fertility.

A few participants discussed their experiences of miscarriage and termination, citing these as traumatic and intensely isolating. They reported being offered inappropriate or no support. Lack of access to disability aware support services had led three women to attempt suicide following miscarriage or termination of a pregnancy.

Some women, considering adopting, withdrew from the process at the medical assessment stage as they felt the assessment would prejudice their chances negatively. At the time the research took place, a large adoption agency had only two registered disabled adoptive parents in the whole of Scotland.

Conclusion

This short article shares some of the experiences of 27 disabled women resident in Glasgow and Edinburgh. Although the focus is on barriers to motherhood, a minority of women had positive experiences but these were few and far between. These women experienced a more person-centred approach, where their access and care requirements had been accommodated. In these circumstances, women experienced a more positive and confident start to their mothering.

Since completing this research, the Disability Equality Duty has been introduced and I would hope that this powerful piece of legislation - which requires public bodies to promote equality in their policies and working practices - will improve access to services for disabled women, particularly in relation to physical access, and access to information and support services in connection with reproductive choices.

I would like to acknowledge the enthusiasm, support and commitment of the women who participated in this research, to whom I am deeply indebted.

Editor's note: Since this article was written, the Royal College of Nursing has issued new guidance for midwives and nurses working with disabled pregnant women. Please see Resources: Guidance for midwives and nurses.