"Although the DDA has gone some way to ensuring physical access to maternity services, attitudes and perceptions of many people still need addressing."

Jackie Topp is a disabled parent and researcher in her final year at The Open University. This article, about her on-going study of the experiences of disabled women during pregnancy, is based on a presentation she gave at Leicester University, UK.

Transitions through pregnancy

My PhD study – Narratives of disabled women: transitions through pregnancy – aims to provide an understanding of some of the many issues that surround the experiences of some disabled women who have gone through a pregnancy since 1999.

Scope, model and method

All the participants live in one county in England. Although I have not undertaken a service review, my research aims to have the potential of making a difference to local services for pregnant disabled women and I am working with the local primary care trusts by accessing participants through health visitor referrals. I am also working with relevant social care directorates and voluntary organisations. Once my research is complete, I will report back to all the relevant agencies.

In line with the social model of disability (Oliver 1990) I define the women participating as `disabled women'. By this I mean women who are in some way not permitted to take part fully in society due to environmental or attitudinal barriers that prevent full inclusion. I am interested in differences between each woman's medical diagnosis but specifically I am concerned with how each participant identifies herself as a `disabled woman' and how this affected her transition through pregnancy.

I chose narrative analysis as my research method. This means I am looking at the stories that women tell me about their experiences of becoming a mother. Polkinghorne (1988) and Lieblich et al (1998) remind us that we know or discover ourselves, and reveal ourselves, by the stories we tell.

Women's stories

To date I have listened to the stories of 13 disabled women. Most do not identify with the social model definition of a disabled person. For example, one participant told me:

"I think of myself as someone with an illness. You know I've got an illness because you know I can walk but sometimes when I am feeling weak I have problems walking, I drag my leg and have to hold onto things but still I don't say I'm disabled."

Only one participant explicitly knew of the social model of disability. Some identify themselves using only the language of the individual model of disability, for example describing themselves as someone with an illness. The narratives of all the women I listened to indicated that they saw themselves as stigmatised in some way through having an embodied difference (see Goffman 1963), yet all recognised they had the right to be parents and wanted to be independent.

Ten participants felt they had received positive support from their general practitioners and consultants:

"GP was wonderful, she was really good ... when the results came back that I was pregnant she actually phoned me so she was really pleased."

Most participants told stories of praise, particularly in terms of emotional support given by community midwives and health visitors. However, few participants either expected or received specific information, support or guidance on matters concerning practical help as a disabled mother. Not one participant recalled any healthcare professional providing information about Disabled Parents Network, DPPi or any other support group.

Narratives of delivery were very much normalised by participants in that most followed the usual medical route. Only one participant specifically planned and pre-arranged her delivery to suit her needs, and not those of the medical profession. Two women said they would have liked home births but that their husband/partner did not want them to, seeing it as an unnecessary risk. Most of the others did not even consider a home birth.

Addressing needs

How each woman's needs were recognised and addressed once in hospital varied considerably. The maternity environment was generally found to be suitable at both hospitals in the county and the attitudes of midwives were found to be generally helpful. Three participants highlighted how some staff went out of their way to ensure that their individual impairment needs were met but this seemed to happen as a result of a crisis rather than as planned support. It appeared that a woman's emotional needs in relation to her having an impairment, as well as the physical and emotional needs of becoming a mother, were often neither explored nor recognised during the pregnancy.

Some participants had not thought ahead to the future, including how they were going to manage with some of the practical issues of caring for a baby who would become bigger, heavier and mobile. Many mothers depended on their own family for practical support and knew nothing about their right to an assessment for childcare needs, or their husband's right to an assessment of his needs as a `carer'. Only one participant used direct payments for childcare and this was as a result of coming into contact with a local organisation of disabled people who supported her through the process. Others recognised that they needed more support but were loath to contact social services; the feeling of being judged as incapable if they asked for help seems to be very much a part of these participants' understanding.

My research supports Wates (2003) who calls for information and services for disabled mothers to be fully integrated into mainstream maternity services. Additionally, my research appears to show how the individual model of disability remains the dominant way of identifying as a disabled person and how this continues to oppress women during their transition through pregnancy. Adequate support, education and information are not being provided by maternity services and women do not know where to go or what to ask for. Although the DDA has gone some way to ensuring physical access to maternity services, attitudes and perceptions of many people still need addressing.

References

Goffman, E. 1963. Stigma: notes on the management of spoiled identity. London: Penguin.

Lieblich, A et al. 1998. Narrative research: reading, analysis and interpretation. London: Sage.

Oliver, M. 1990. The politics of disablement. Basingstoke: Macmillan.

Polkinghorne, DE. 1988. Narrative knowing and the human sciences. Albany: State University of New York Press.

Wates, M. 2003. 'Make it mainstream'. Community Care: September 24: 40–41.