It is estimated that there are in the region of 1.2–4 million disabled parents in the UK but exact numbers are unknown because of difficulties with calculations (Disabled Parents Network 2006). People with physical and sensory impairments appear to be the most prevalent. Of this number there are many who face barriers both in their maternity care and their parenting role. Expectations are not met, and overall experiences have not always been positive. This is often the same for their carers; midwives in particular find themselves unprepared, lacking in disability awareness and knowledge of disability issues.

This chapter focuses on the needs of women with physical or sensory impairments. Within these criteria, no boundaries are set for age or type of impairment, however women with mental health needs will not be considered as they are not within the remit of this book. Using experiences from my personal and professional life and information from contacts, I have included three composite case scenarios at the end of the chapter to illustrate service provision. None of these ‘cases’ actually refers to an individual case therefore there are no issues of breach of confidentiality. One of these ‘cases’ describes a couple with learning disability; the specific needs of women with learning disabilities are discussed in Chapter 5.

The aim of this chapter is to explore the maternity needs of disabled women with physical and sensory impairments as perceived by disabled women themselves. It will also address the specific maternity care priorities and needs of this client group. Women’s own experience of pregnancy and parenting will help identify gaps in service provision and make services better targeted to need. It will enable health carers to focus on the needs of disabled women to ensure a maternity service that is woman centred and evidence based.

Specific chapter objectives listed below will help service providers to:

A systematic, computer-assisted search of the literature showed that there is little research into the maternity needs of disabled women. Some qualitative evidence exists and reports of case studies, but much of the literature is primarily anecdotal in nature. My experience in this area has also identified a lack of relevant literature available for disabled women and their health carers. There is some evidence in the area of learning disabilities, but here the literature tends to focus mainly on the needs of the child and not always the needs of the parent. Furthermore, other writers confirm that there are relatively few published studies on the maternity and parenting experience of disabled women (for example Thomas & Curtis 1997). Campion (1990) and later Shackle (1994) both reported disabled women’s experiences of negative attitudes in relation to their sexuality and parenthood. The latter information was the report of results from a conference organised by the Maternity Alliance giving details of disabled women’s experiences of the maternity services. Findings from this conference generated the UK midwives’ professional body: the Royal College of Midwives (RCM) to publish a position paper (1996) to give midwives guidelines for their practice which was updated in 2000.

Despite these guidelines however, Shackleton & Goddard (1997) claimed that disabled women who choose to become parents still experience discrimination, disempowerment and insensitivity from health professionals. They discussed the need to explore emerging themes identified by disabled women themselves in order to make recommendations for change. However, it must be acknowledged that the experiences reported by the women may have occurred long before the first RCM position paper was published. Furthermore, some women are reluctant to focus on the impairment alone preferring to adopt the social model of disability.

Personal contact with disability specialists and support groups also confirms that research in this area is needed. In view of this therefore, there is clearly a necessity to determine the needs of this minority group to meet individual requirements. Without this, obstetricians, midwives and other health carers will be faced with providing care and support often in situations where they may have little or no experience (Carty 1998) and with little evidence to guide practice. Indeed, as disability and maternity are two words rarely seen together in the same sentence according to Campion (1997), it is not surprising that many health carers are unsure how best to provide maternity care to this minority group.

Culley & Genders (1999) confirm this need for more information as highlighted in a research project designed to examine the role of learning disability nurses in supporting people with learning disabilities who become parents. They argue that training is essential to providing a person-centred service where disabled people are valued and respected and where attitudes are positive and appropriate.

Disabled women have been identified as a group that the present maternity services are failing. The RCM (2000) believe that midwives have a key role to play in meeting the needs of disabled women and supports the woman-centred principles set out in the UK government’s document Changing Childbirth (DoH 1993) that physical access and the attitudes of professionals do not prevent access to services.

Inadequate services are no longer acceptable and some legislative progress has been made to help rectify the issues. The most significant legislation of the decade in the UK is the Human Rights Act 1998 which came into force in October 2000 (Dimond 2000). It is extremely likely that this Act has ensured that more concern is directed to the rights of the individual. Similarly the UK Disability Discrimination Act (DDA) (1995) draws attention to the duty of care for service providers in the respective parameters of access, communication and disability awareness training, embracing these concepts to improve the quality of healthcare provided. The DDA states that it is unlawful to provide a lower standard of service to disabled people and focuses on three areas of concern:

Maternity services can place barriers for disabled women which Dimond, 2003 and Dimond, 2004 points out is illegal as it is discriminating against them. Left unaddressed these barriers often give rise to prejudice and ignorance of individual needs. Problems may arise if these needs are not met. The DDA states that reasonable adjustments are to be made to ensure that services are not impossible or unreasonably difficult for disabled people to access and use. Part 3, Section 21 identifies three key areas for action:

The legislation in the form of the DDA, and more recently the new maternity services standard published as part of the National Service Framework for Children Young People and Maternity Services (NSF) (DoH 2004) sets out the principles of care that midwives should offer to all women and that of course includes those with a disability. The latter document continues to revolve around promoting women centred care and advocates informed choices as did Changing Childbirth (DoH 1993). Access to up-to-date and relevant information, in particular preconception advice, care and support; working in partnership; appropriate care pathways; and alliances and networks, are all highlighted.

Standard 11 of the NSF addresses the requirements for women during pregnancy and maintaining contact before and after the birth process. Maternity services are to be proactive in engaging all women early in their pregnancy, particularly women from disadvantaged groups and communities. The principles of the government which initiated the Sure Start system, whereby midwives and other health professionals work with disadvantaged groups of pregnant women and new mothers and babies, should be extended across other services i.e. working with parents and children. This should be started early, be responsive to women’s needs and be flexible at the point of delivery. There must be provision of services for everyone ensuring they are community driven and professionally coordinated across agencies, and outcome focused. Sure Start midwives engage with disadvantaged groups and midwifery-led centres are being developed in deprived areas to ensure care is locally based and accessible.

Maternity care providers and Primary Care Trusts should plan the provision of maternity services based on an up-to-date assessment of the needs of the local population e.g. identifying specific vulnerable groups. Involving service user groups to explore the reasons why women from these groups find it difficult to access and maintain contact with maternity services will improve the access to, and effectiveness of, maternity services for minority groups. This means that providers must ensure that local maternity services are inclusive for women with learning and physical disabilities taking into account their communication, equipment and support needs.

Services need to be innovative and flexible in meeting the needs of women with communication difficulties and other disabilities, and informed by best practice from settings and regions caring for disabled women across the country. To aid this it is suggested that a directory of local and national agencies is developed that can provide expert advice and support for professionals working with women from disadvantaged and minority groups and communities. There should be inter-agency arrangements, including protocols for information sharing. Additionally, to promote the health and well-being of the mother and her baby, it is highlighted that there is the need for a lead professional who will help to ensure that women from disadvantaged groups have adequate support from other agencies.

It is clear from the literature and my own experiences in practice, that the most common themes for disabled women are lack of relevant information, barriers to access to services, and negative attitudes from professional carers. Disabled women want to be treated like all other women but not at the expense of the disability being overreacted to or ignored. There is a tendency for the needs of disabled women to become more medicalised as professional carers often view pregnancy as problematic. As a consequence the experience of childbirth becomes one of ‘high risk’. This usual traditional view is not the case for every disabled woman. Being realistic however, one must be aware that problems may arise, but this is also the case for non-disabled women. Disabled women themselves live within their strengths while recognising their limitations: knowing what they need and what they do not. Carers should, therefore, respect their individuality, seeing them as women first, disabled second.

One of the components of the UK Disability Discrimination Act (1995) is ‘Disability Awareness’: the process of informing and empowering individuals in disability etiquette. The biggest barrier cited by disabled people is that of negative attitudes and behaviours.

The view of many disabled people is that professional carers are not disability aware. There is a lack of understanding by many GPs, obstetricians, midwives, and other carers as to their needs. Women are not asked directly, there is no mention of the impairment and the implications thereof, and there is an obvious lack of specialist knowledge. The duty of care is the responsibility of all carers in order to be informed, enabled and empowered to provide an inclusive philosophy of care.

Thomas and Curtis (1997) support the claims made in Changing Childbirth (DoH 1993) in that professional practice and other features of maternity services can place barriers for disabled women. Left unaddressed these barriers often give rise to prejudice and ignorance of individual needs. The current literature identifies three predominant barriers faced by disabled women: attitude and behaviour, access to services, and care by professionals. The experiences of disabled women highlighted by Shackle (1994) summarises the negative attitudes that exist, poor access to services and the lack of relevant literature available for disabled pregnant women and their health carers; as one disabled parent commented to me: ‘it should not be down to informal conversations with other parents and the luck of the draw with professionals as to whether relevant information is given’.

Following a recent opportunistic survey, Wates (2003) claimed that the level of support given is often dependant on the individual relationship between a disabled woman and her professional carer, and that certain professional groups are more supportive than others, although variations between groups do exist. In the report, ‘It shouldn’t be down to luck’, Wates (2003) describes what over 150 disabled parents said about access to information and support. Although midwives and maternity services were not specified directly, this study highlighted that even to the present day disabled women who choose to become parents are still experiencing discrimination, disempowerment and insensitivity from health professionals.

My professional experience of midwifery, parenting and disability reflects and confirms these findings in that negative attitudes abound, and the need is for more midwives and other carers to provide individualised care centred on each woman to make a difference. The level of services received by disabled women is often influenced by the underlying beliefs and attitudes of service providers. Attitudes towards disabled people are often negative. This is highlighted in the UK Disability Discrimination Act 1995 as the most influential and most common barrier to this client group.

This negativity is associated with the many myths around disabled pregnancy and parenting. For example, assumptions are made that women with a physical impairment do not want, or are unable to pursue the role of parenting. Similarly, it is often thought that disabled women cannot adequately care for and meet the needs of their child. Typically these views focus on issues of the individual coping and the associated ‘problems’. Therefore they concentrate on the impairment and pay little attention to the social perspective. There is also popular belief that people with learning difficulties have more children and that their children will be neglected because of inadequate parenting skills (Shackleton & Goddard 1997).

Although these issues may be real in some cases, this is not the norm for the majority and is not the perspective from which healthcare policies should begin. Positive attitudes can only be developed as people have regular contact with disabled women and mutual respect in their diversity. Change is therefore necessary in order to provide equity in maternity care provision for disabled women. It is the responsibility of all carers to explore their own attitudes, to investigate the needs of this minority group, and be willing to be prepared to meet the challenge.

Ask yourself, why is it that so many disabled women struggle in these areas, having to justify their reasons to become parents, to convince health carers that they are women first and want to fulfil the role of motherhood? Do you give disabled parents the credibility and respect they deserve? Many have planned and considered the implications of disabled parenting very carefully. It is often the belief that disabled people are irresponsible, that the pregnancy is a mistake or that they will be unable to cope with the needs and demands of parenting. This results in women having concerns about pressure to become good mothers due to professionals’ unhelpful support.

Disabled women need to be accepted and supported in their choice to become parents and to be cared for and informed like all other women. Evidence suggests that information aimed at parents and families tends to omit the issue of disability, whereas information for disabled people rarely covers parenting (Wates 2003).