Women with Disabilities: Barriers and Facilitators to Accessing ...

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WOMEN WITH DISABILITIES: BARRIERS AND FACILITATORS TO ACCESSING SERVICES DURING PREGNANCY,CHILDBIRTH AND EARLY MOTHERHOODSchool of Nursing and Midwifery, Trinity College Dublinthat the vast majority of women in Joseph et al’s survey (1999) felt it importantto continue to be involved in raising their children, although the majority (88%)were not currently the primary caregiver, and requested help in getting theirchildren returned to them. Those who had lost custody of their children even tofamily and friends suffered a powerful stigma associated with not being able tolook after their children (Diaz-Canjela and Johnson, 2004). Some women feltthe stigma and pain so strongly that they said they frequently lied, when asked ifthey had children (Chernomas et al, 2000). Although the pain and distressassociated with the loss of children can negatively impact on the women’srecovery, women in Diaz-Caneja and Johnson’s (2004) study described aprofound silence on the subject from mental health professionals. In somecases the woman’s despair was interpreted as a symptom of illness (Fox,1999). Nicholson (2005) suggests that, in the United States, child custodyissues and the fear of loss of custody or contact with children is sometimesused as a leverage point to get women to comply with and participate intreatments. She highlights the need for further research into the prevalence,circumstances and impact of this ethically questionable practice. No studieswere located that explored the impact of custody loss on women with mentalhealth difficulties. The importance of this issue is highlighted by Swain andCameron (2003) who point out that parents are often unrepresented in courtproceedings, and it is seldom that formal court interventions are used to helpparents to regain custody of their children. They argue that the assumption thatparents with a mental health disability are unable to care for their children mustbe challenged.2.7. Women with intellectual disabilities: pregnancy, childbirth,and early motherhood2.7.1. IntroductionA thorough review of the intellectual disability literature yielded little publishedresearch specifically examining the experience of women/mothers withintellectual disability, but did provide an insight into the context within which39
WOMEN WITH DISABILITIES: BARRIERS AND FACILITATORS TO ACCESSING SERVICES DURING PREGNANCY,CHILDBIRTH AND EARLY MOTHERHOODSchool of Nursing and Midwifery, Trinity College Dublinpregnancy and parenthood in the intellectual disability population is viewed.Two key issues emerged, demonstrating that there are variations in the labelsused to classify people with intellectual disability, and there is inconsistency inthe defining characteristics under those labels. It was apparent, also, that therewas an incremental development of thought around the issue of women withintellectual disability, with an almost chronological emergence of key themesfocusing on the attitudes and response patterns to the ‘problem’ of women withintellectual disabilities; the realisation and acknowledgement that some peoplewith intellectual disabilities had actually become parents; the presumption thatparenting by such people was inherently inadequate; and the need to protecttheir children from abuse and neglect. These themes are described here toilluminate the context within which barriers and facilitators to maternity-relatedhealth of women with intellectual disabilities will be discussed in Chapter 6.2.7.2. Labels, definitions and diagnostic criteria2.7.2.1. Labels used to classify people with intellectual disability‘Intellectual disability’ is one of a number of terms used internationally but is notuniversally agreed as being appropriate (Eastern Regional Health Authority(ERHA), 2002). The other most commonly encountered terms include: learningdisability; developmental disability; mental and severe mental impairment; andmental retardation. The use of labels is somewhat dynamic; thus, in the past 25years the United Kingdom has changed from ‘mental handicap’ to ‘learningdifficulty’ to ‘learning disability’ whilst ‘mental and severe mental impairment ‘arethe terms used within the United Kingdom mental health legislation (UnitedKingdom Parliament, 1983; Department of Health, 2001). In the past 15 years,Ireland (Government of Ireland, 1990; ERHA, 2002; Government of Ireland,2005), Australia (Cocks et al, 1996) and New Zealand (New Zealand Ministry ofHealth, 2003) have changed usage from the terms ‘mental handicap’ and‘learning disability’ to ‘intellectual disability.’ The ‘mental handicap’ label iscontained within the current Irish Nursing Act (Government of Ireland, 1985;Keenan, 2007) but not in the more modern Disability Act (Government ofIreland, 2005). In the United States, ‘mental retardation’ is still widely used,although there is evidence within the literature of increasing use of the terms40
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