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 Dublinearly motherhood is relatively unexplored (Grue and Tafjord-Laerum, 2002; Leeand Oh, 2005). From an Irish perspective, research in the areas of sexuality,reproductive freedoms and motherhood for women with disabilities is limited(Doyle et al, 1985; Kennedy, 2004; Steinberg, 2006). From an intellectualdisability perspective, in particular, the literature search yielded little informationon the topic in hand but did provide an insight into the context within whichpregnancy and parenthood within the intellectual disability population is viewed.A large volume of literature focused on controversial issues including thecoerced planned termination of pregnancy and the constant questioning of the‘right to parent’, especially in relation to persons with a mental health difficulty orintellectual disabilities. The following sections provide a background and contextin relation to society’s attitudes to, and disabled women’s experiences of,pregnancy, childbirth and motherhood in Ireland.2.5. Physical and sensory disability: pregnancy, childbirth, andearly motherhood2.5.1. Background and contextWomen and girls are the largest group in the global disability population, and,historically, have been subjected to multiple types of discrimination (Tilley,1998). In comparison to men with disability, women with disability are less likelyto marry, have a higher incidence of divorce, earn less money, and are viewedmore negatively by themselves and others (Tilley, 1998). They are thusconsidered by many to be among one of the most disadvantaged groups inmodern society (Thierry, 1998).Women with physical disabilities express a strong perception that theythemselves, and their lives, are invisible to others (Pierce, 2003; Zitzelsberger,2005), particularly when interacting with health care professionals, who appearto view women as powerless and passive users of services (Grue and Tafjord-Laerum, 2002). Combined with inadequate information provision, poorcommunication, and no opportunity to influence decision-making, women are19
WOMEN WITH DISABILITIES: BARRIERS AND FACILITATORS TO ACCESSING SERVICES DURING PREGNANCY,CHILDBIRTH AND EARLY MOTHERHOODSchool of Nursing and Midwifery, Trinity College Dublindisempowered and, consequently, negative feelings such as fear, anger,disappointment, distress, guilt, and inadequacy take hold (Baker et al, 2005).The fundamental right to health and attainable quality health care is animportant provision for women with disabilities but it also serves as a means forwomen to live independently and to fulfil a life of active participation andinclusion in modern society. Moreover, access to quality health care and bestpractice is essential for women with physical disabilities because they faceunpredictability in relation to the impact pregnancy may have on their disabilityand, similarly, the impact physical disability will have on their pregnancy(Conine et al, 1986; Smeltzer, 1994; Baker et al, 1997), and on their abilities toadapt and cope effectively with the transition to parenthood.2.5.2. Evolution of the concept of disabilityDisability is a highly complex concept with varying definitions. In more recentyears, the traditional concentration on the functional deficits and problems of theindividual, where the term ‘disability’ implies incapacities or failings on behalf ofthe person, or a defect or impairment of themselves (Michailakis, 2003) hasbeen robustly challenged (Verbrugge and Jette, 1994). The social model ofdisability determines that pathology is not intrinsic to the individual (Gronvik,2007), but rather disability is perceived to be a functional limitation(s), resultingprimarily from environmental and social barriers, inadequate access to essentialrehabilitation therapies and assistive technologies.In 1976, the World Health Assembly of the World Health Organization approvedfor publication a classificatory instrument for disability, the InternationalClassification of Impairments, Disabilities and Handicaps (ICIDH). In thisinstrument, the term ‘impairment’ was used to describe the functions andsystems of the body affected (e.g. cardiac, respiratory), ‘disability’ was used todescribe limitations in, for example, a person’s mobility, or ability to performpersonal care, and ‘handicap’ was used to describe the disadvantagesexperienced by people in their environment (for example, in employment orindependence). Facets of both the medical and social models are apparent, but20
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