This chapter provides, firstly, a brief introduction to childbirth and motherhood in Ireland. An outline is then provided of the difficulties in ascertaining information from official statistics on the number of women in Ireland with disabilities in each category of interest. Definitions are included where necessary and the historical background and context of pregnancy, childbirth and motherhood for women with physical, sensory, mental health and intellectual disabilities is given. Finally, societal attitudes to all women with disabilities are described, which may lead to barriers for women with disabilities in accessing suitable services in pregnancy, childbirth or motherhood. This chapter sets the scene for the presentation of a detailed exploration of facilitators and barriers to access of services in succeeding chapters.
The provision of maternity care, presently supplied through 20 maternity hospitals/units (19 of which are publicly-funded), catered for 64,237 births in 2006 (Central Statistics Office (CSO), 2008a). Over the past 4 decades, maternity care has become increasingly medicalised due to 3 main factors:
The dominant model now in use is that of consultant-led, hospitalised birth (Wagner, 2001; Devane et al, 2007), although there are in existence 2 pilot midwifery-led units and various midwifery-led initiatives such as 'early transfer home' and 'Domino'[1] schemes. The increasing use of technology, characterised as technocratic birth (Davis-Floyd, 1992), and the prevalence of the 'economic model' of childbirth (Begley, 2002) has led to a diminution of emphasis on the importance of women's experiences during pregnancy and childbirth, making them almost "invisible" in the process of their own pregnancy and birth (Begley and Devane, 2003).
Across many advanced societies, the movement demanding changes in maternity services towards more women-centred care, including the key tenet of choice, has grown up alongside, and in opposition to, the increasingly interventionist provision of maternity care. In the United Kingdom (U.K.), it has received serious parliamentary consideration in the last decade leading to new national policies and directives (Department of Health, 1993).
In Ireland, choice and women-centred care have been described as a minimum requirement for responsible maternity care by a recent pressure group of concerned women, midwives and maternity carers (Choices in Childbirth Initiative, 2007). Despite this, a national survey of 500 mothers (including those with and without disabilities) conducted by the Irish Examiner and Lansdowne Market Research found that 63% of women in this sample were unhappy with aspects of their care during pregnancy or birth (O'Doherty and Regan, 2006). In particular, waiting times and travelling distances to attend antenatal clinics were a cause of distress, with 20% of women in Munster forced to travel 31 miles or more to give birth (O'Doherty, 2006). It is clear that women with disabilities may thus be in an even more challenging situation.
A decade ago, Barbara Murray and Audrey O'Carroll commented that the lives of women with disabilities in Irish society remained largely hidden compared with able-bodied women (Murray and O'Carroll, 1997:pg. 494). They suggest the experience of pregnancy and child birth can change this but not necessarily in a way that fully supports and encourages the expectation that women with disabilities can undertake mothering successfully, let alone live their lives with resilience, creativity and positivity.
According to Segura (1994), society's construction of motherhood is based on studies of white, middle class women, not women of colour or less privileged women. Thus it may be hard within Irish culture to accept women with disabilities as mothers, as they differ from the norm. It may also be particularly difficult to change the institutional culture of maternity care in Ireland that has lessened women's involvement for so long, especially when coupled with other factors, such as a massive under-investment in wide-ranging midwifery services in the community.
Official statistics on a limited range of what are now termed 'disabilities' date back to 19th century Ireland in the form of the first modern national Census of 1841. Doyle (Doyle, 2003:pg.11) lists the categories that were used up to the Census of 1911 as follows:
McDonnell observes that the impetus for this classification and number-gathering reflected the perceived need to sequester 'unfit' people within charitable institutions and schools that would impart some sort of 'moral' training and occupational skills to them and so avoid their becoming a 'burden' on the wider society (McDonnell, 2003:pg. 29). This historical period was dominated by the ideology of the Poor Laws and the workhouse and the division between the 'deserving' and 'undeserving' poor. McDonnell relates that, with the exception of the Stewart Institution which, from its inception in 1869, did have a clear educational ethos, the common practice was to send those who were officially termed the 'chronic and incurable classes' (McDonnell, 2003:pg. 29) either to the workhouse or to a kind of custodial asylum. After Independence, people were sent to county homes and mental hospitals. This form of 'disability apartheid' was 'carefully organised' (Conroy, 2003:pg. 45).
Through most of the twentieth century, individual service providers and, later, local health boards did collect some data on the incidence of disability, but it was not standardised nor was it redirected into a national database. Instead there was a gap of 91 years between the 1911 Census and the 2002 Census, with no population-based enumeration of people dealing with any form of disability or impairment (Doyle, 2003:pg. 11-12).
In 1996, the Commission on the Status of People with Disabilities called for improved data and statistics (Commission on the Status of People with Disabilities, 1996) to enhance service planning and provision for people with disabilities. Thus, the Central Statistics Office put in place questions on disability for the 2002 Census, emerging with an overall figure of 323,707 or 8.3% of people in the state identifying themselves as having a long-lasting health problem or a disability, of which 171,901 were women (CSO, 2004a). The CSO also conducted a survey on disability in Quarter 2, 2002 as a module of its Quarterly National Household Survey (QNHS) which concentrates on employment activity. The QNHS in 2002 recorded 10.3% of all people aged 15-64 reporting a disability/health problem (CSO, 2004b). This module was repeated in Quarter 1 in 2004 with very little change in the numbers reporting a disability, 10.9% of all people surveyed, numbering 298,300 in all, with just under half of those (142,500) being women. Only 37% of this 298,300 were in employment compared with 63.8% for the total population (CSO, 2004b). These figures have implications for the poverty and continuing social exclusion faced by people living with a disability, the vast majority of whom do not have an earned income because access to the labour market is so poorly supported (Conroy, 2003:pg. 48). The CSO intends to repeat the QNHS at intervals, which will build up longitudinal data on employment patterns that will constitute one measure of the effectiveness, or otherwise, of social inclusion policies.
This initial CSO QNHS data provided useful interim figures on the extent of disability in Ireland, while the National Disability Authority piloted an in-depth data collection exercise for a post-Census survey of those registering themselves on the Census returns as having a disability (Doyle, 2003:pg. 11-12). This work complemented that of the Statistics Board, carried out in conjunction with the Department of An Taoiseach, to develop data collection tools to cover anyone affected by any of the 9 grounds for discrimination identified in the Employment Equality Act, 1998 and the Equal Status Act, 2000 (Doyle, 2003:pg. 12).
The work of framing more sensitised questions, which included consultation with service users and interested Non-Governmental Organisations (NGOs), resulted in the 2006 Census using an expanded number of categories to explore disability in questions 15 and 16 of the Census form (CSO, 2007a). The categories were as follows:
(CSO, 2007b).
With modifications to the questions used, the 2006 Census yielded a figure of 9.3% of the population having a disability, and a higher number reporting more than 1 disability, 62%, compared with the 58.1% figure from 2002 (CSO, 2007b). The breakdown of figures on women with a disability between the ages of 15 and 44 (almost the entire span of reproductive years in a woman's life) revealed a total population of 52,232 (CSO, 2007b:pg. 45).
Figures from the National Disability Survey (NDS) are subject to sampling error, particularly where small subsamples are involved, so should be taken as indicating a 'ballpark' or broad order of magnitude rather than precise figures. These figures show about 20,000 women aged 18-34 and about 18,500 women aged 35-44 had a disability in one or more of the 9 categories used in the survey (National Disability Survey, vol. 1 Table 5B). The most frequently-cited conditions for women of childbearing age were mental health conditions, pain, mobility, intellectual and learning disability, and difficulties in remembering and concentrating (Table 1).
Table 1 - Number of women of childbearing age with different kinds of impairment (Thousands)[2]
|
|
18-34 |
35-44 |
Total 18-44 |
% of disability among total number of women in this age group |
|---|---|---|---|---|
| Seeing |
1.9 |
1.3 |
3.2 |
0.4% |
| Hearing |
1.7 |
1.8 |
3.5 |
0.4% |
| Speech |
2.6 |
1.2 |
3.8 |
0.4% |
| Mobility & Dexterity |
7.1 |
8.6 |
15.7 |
1.8% |
| Remembering & Concentration |
6.7 |
5.3 |
12.0 |
1.3% |
| Intellectual & Learning |
6.9 |
3.2 |
10.1 |
1.1% |
| Emotional, psychological & mental health |
8.8 |
10.0 |
18.8 |
2.1% |
| Pain |
7.8 |
9.6 |
17.4 |
2.0% |
| Breathing |
3.0 |
2.9 |
5.9 |
0.7% |
| Total Disabilities |
46.6 |
44.0 |
90.6 |
|
| Persons with a disability |
20.0 |
18.5 |
38.5 |
4.3% |
| Average disabilities per person |
2.3 |
2.4 |
Source: National Disability Survey Vol. 1 Table 6b
These figures are subject to sampling error and represent broad orders of magnitude only
According to the National Disability Survey, the number of women of childbearing age with significant sight impairments is of the order of 3,200. Overall, just over half of people with sight impairments recorded in the NDS reported a moderate level of impairment, about 40% reported a lot of difficulty and about 5% could not see at all. If women with sight impairments and of childbearing age were proportionately represented in the 2007 births, there would have been of the order of 280 births to such women.
Comhairle (now Citizens Information Board) in conjunction with the National Council for the Blind of Ireland contacted all registered blind people in 2004 to ascertain their preferred form of communication with public bodies. The results of this exercise, in which 1,800 people participated, showed that 54% preferred to use large print, 35% would like audio communication and 3% preferred to use Braille.
About 3,500 women of childbearing age have significant hearing impairments. If women with hearing impairments were proportionately represented in the total number of births in 2007, there would have been of the order of 280 births to such women. Of these, the number who would be expected to have a lot of difficulty in hearing, or total absence of hearing, would be approximately 95. This is given that, overall, about 60% of people of all ages with hearing impairments have a moderate level of difficulty, about a third have a lot of difficulty, and about 3% cannot hear at all.
In general, people with hearing impairments report finding it somewhat easier to communicate with health professionals than with others providing everyday services; however, this may reflect a relationship with a particular health professional and may not apply in respect of short hospital stays for maternity care. Overall, about one in ten people with a hearing disability reported they were unable to communicate with a health professional, while twice as many reported they could not communicate with others providing everyday services. About 45% reported some difficulty communicating with people providing everyday services, but 37% had moderate difficulty communicating with health care professionals. About a third had no difficulty communicating with people providing everyday services, and this rose to half in the case of health professionals (ibid, Table 15.7).
The number of women of childbearing age with speech disability is of the order of 3,800. While there is some overlap between hearing and speech disabilities, there are a number of other conditions that can lead to speech difficulties. In general, this group report greater degree of difficulty in communicating with health care professionals and other service providers than do persons with a hearing disability. Half report that they are unable to communicate with service providers generally, while about a third report that they cannot communicate with health service staff. About 40% can communicate with health service staff with difficulty, falling to about 35% in respect of other service providers. About a quarter have no difficulty communicating with health service professionals, but only half that number have no difficulty communicating with other service providers (ibid, Table 16.7).
About 16,000 women of childbearing age, or about 2% of women in this age group, have disabilities affecting their mobility or dexterity. Most of these report that they have difficulty walking for 15 minutes, while about a third have difficulty using hands or fingers. Across all age groups, about one in six people with impaired mobility uses a wheelchair.
A national database on mental health does not exist in Ireland although there are statistics on aspects such as in-hospital bed occupancy rates available through the National Psychiatric Reporting System (Doyle, 2003); however, this information is extraordinarily limited in scope. Whereas it might outline how many women have been admitted, little else can be gleaned from available socio-demographic data. The HRB is, however, developing the WISDOM database (formally known as COMCAR/NPIRS), which will cover all components of the mental health services, including individual's usage of community and inpatient services, as part of the Mental Health Research Programme 2007-2011 (HRB, 2006, 2008).
Some data are available, however, from the National Psychological Well-being and Distress Survey (NPWDS), carried out by the Mental Health Research Unit (MHRU) of the Health Research Board (HRB) in 2006 (Tedstone Doherty et al, 2007). Out of 2,711 respondents, 18.5% (n=490) of females had dependent children younger than 18 years old living in their household, and of those, the majority (86.1%, n= 420,) rated their mental health in the last 12 months as good or very good, 10.7% as fair (n=52), and 3.1% (n=15) as poor or very poor. Seventy-eight (15.9%) of the 490 females living with children younger than 18 years old reported that they had experienced a mental, nervous or emotional problem in the last 12 months, and 11% (n=54) had spoken with their General Practitioner (GP) at least once in the past 12 months about being anxious or depressed. Slightly over 6% of females living with children under 18 (n=30, 6.3%) reported use of mental health services or professionals (such as in-patient units, day centre psychiatrists or nurses) at least once within the past 12 months (Tedstone Doherty et al, 2007), which gives an approximate picture of the services that might be required.
About 19,000 women of childbearing age, around 2% of the age group, report emotional, psychological or mental health difficulties. Across all age groups, depression is the most common mental health condition, followed by anxiety (National Disability Survey, vol 1 Table 20.6). Almost 90% of women with mental health difficulties in this age group report that they have a lot of difficulty or cannot do everyday activities.
Since 1995, the National Intellectual Disability Database has compiled figures on the numbers of people with intellectual disabilities based on those who are in receipt of services or on the waiting list for intellectual disability services. The database is updated annually, and currently covers more than 25,000 people. People with mild intellectual disabilities, who are neither in receipt of intellectual disability services nor are deemed to require such services in the next 5 years, are not included in the database.
The published data distinguishes those aged 15 to 34, and those aged 35-54. The incidence of intellectual disability for women is calculated at 8 per 1,000 for women aged 15 to 19, 5.4 per 1,000 for women aged 20-34 and 6.1 per 1,000 for women aged 35 to 54. In 2007 there were around 4,000 women aged 15-34 with an intellectual disability recorded on the database. Of these, 40% were categorised as having a mild disability and 40% as having a moderate disability (NIDD 2007, Table 2.2)
The data from the National Disability Survey shows around 8,200 women aged 18-44 diagnosed with an intellectual disability (Table 6B), and around 10,100 women in this age group in the broader category of "intellectual or learning disability" which would include also such specific learning disabilities as dyslexia and Attention Deficit Disorder.
This section has documented available information from official sources on the number of women with disabilities of childbearing age, and the incidence of such disability in this population. Where the information is based on small sub-samples, it indicates a broad order of magnitude only. While the number of women with disabilities who require pregnancy and maternity services is likely to fluctuate from year to year, this information may be of value to service planners in giving a broad indication of how many women with disabilities may present for maternity services in any year.
The comprehensive review of national and international literature revealed how research examining the health services experience of women with disabilities (physical, sensory, intellectual and mental) during pregnancy, childbirth and early motherhood is relatively unexplored (Grue and Tafjord-Laerum, 2002; Lee and 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 intellectual disability perspective, in particular, the literature search yielded little information on the topic in hand but did provide an insight into the context within which pregnancy and parenthood within the intellectual disability population is viewed.
A large volume of literature focused on controversial issues including the coerced planned termination of pregnancy and the constant questioning of the 'right to parent', especially in relation to persons with a mental health difficulty or intellectual disabilities. The following sections provide a background and context in relation to society's attitudes to, and disabled women's experiences of, pregnancy, childbirth and motherhood in Ireland.
Women 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 likely to marry, have a higher incidence of divorce, earn less money, and are viewed more negatively by themselves and others (Tilley, 1998). They are thus considered by many to be among one of the most disadvantaged groups in modern society (Thierry, 1998).
Women with physical disabilities express a strong perception that they themselves, and their lives, are invisible to others (Pierce, 2003; Zitzelsberger, 2005), particularly when interacting with health care professionals, who appear to view women as powerless and passive users of services (Grue and Tafjord-Laerum, 2002). Combined with inadequate information provision, poor communication, and no opportunity to influence decision-making, women are disempowered 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 an important provision for women with disabilities but it also serves as a means for women to live independently and to fulfil a life of active participation and inclusion in modern society. Moreover, access to quality health care and best practice is essential for women with physical disabilities because they face unpredictability in relation to the impact pregnancy may have on their disability and, similarly, the impact physical disability will have on their pregnancy (Conine et al, 1986; Smeltzer, 1994; Baker et al, 1997), and on their abilities to adapt and cope effectively with the transition to parenthood.
Disability is a highly complex concept with varying definitions. In more recent years, the traditional concentration on the functional deficits and problems of the individual, where the term 'disability' implies incapacities or failings on behalf of the person, or a defect or impairment of themselves (Michailakis, 2003) has been robustly challenged (Verbrugge and Jette, 1994). The social model of disability determines that pathology is not intrinsic to the individual (Gronvik, 2007), but rather disability is perceived to be a functional limitation(s), resulting primarily from environmental and social barriers, inadequate access to essential rehabilitation therapies and assistive technologies.
In 1976, the World Health Assembly of the World Health Organization approved for publication a classificatory instrument for disability, the International Classification of Impairments, Disabilities and Handicaps (ICIDH). In this instrument, the term 'impairment' was used to describe the functions and systems of the body affected (e.g. cardiac, respiratory), 'disability' was used to describe limitations in, for example, a person's mobility, or ability to perform personal care, and 'handicap' was used to describe the disadvantages experienced by people in their environment (for example, in employment or independence). Facets of both the medical and social models are apparent, but the model does not clearly acknowledge that the presence of barriers and the absence of facilitators contribute in any way to the difficulties that a person with a disability experiences. The social model of disability is thus only partially adopted and is never clearly acknowledged or operationalised.
In 1993, the World Health Organization began revising the ICIDH, seeking the assistance of disability groups from around the world, including Disabled Peoples International, along with professional groups such as the American Psychological Association and the American Occupational Therapy Association. Two drafts were produced and critiqued and in 2001 the final version, called the International Classification of Functioning, Disability and Health (ICF) was published. This classified functioning at both the level of body/body part, whole person, and whole person within a social context, thus incorporating holism or universalism as its guiding principle (Bickenbach et al, 1999). The main change was that the instrument acknowledged that the environment has an interactional effect on people, which may assist or hinder their participation in life activities, and that this may be more instrumental in a person's inability to participate than the limitations associated strictly with their physical, mental, or emotional state (Lollar and Crews, 2003).
According to Tilley (1998), many of the challenges encountered by women with disabilities when accessing health care are located in prejudicial social attitudes and discriminatory and exclusionary practices of individuals, organisations and institutions. In particular, 'The attitudes of medical professionals towards disabled women as child bearers have often been based on myth rather than fact' (Kallianes and Rubenfeld, 1997: pg 208). These women may experience multiple layers of discrimination, exclusion and inequalities in access to, and use of, mainstream healthcare services (Combat Poverty Agency, 1995). All women experience challenges when accessing health care, but for women with disabilities the challenges are often disproportionate and inequitable (Lawthers et al, 2003). Health inequities are said to be those differences that are unnecessary, avoidable, unfair and unjust (Whitehead, 1992). Such inequities evolve from a complexity of factors including the segregation of women with disabilities, attitudinal barriers, physical barriers and the unmet needs for advocacy (Pillinger, 2004). No single challenge can be considered as compromising a women's access to health care, rather the challenges are an accumulation of several factors (Scheer et al, 2003). These challenges prevent women from accessing health care when required and only serve to isolate and alienate women with disabilities (Grabois et al, 1999) and lead to them feeling as though they have failed as wives and mothers (Mitton et al, 2007). While these challenges may be relatively insignificant for women without a disability, for women with disabilities who need more interaction with, and have an increased need for, appropriate and accessible health care services, the challenges are very significant (Parish and Huh, 2006) and equate to an additional disadvantage in women's health and well being (Iezzoni, 2003).
Many authors have argued that for women with physical disabilities the politics of eugenics has had a long-standing influence on repression of reproduction and the parenting role (Finger, 1992; Waxman, 1993; Kallianes and Rubenfeld, 1997). In addition, health care professionals and broader society exerted paternalistic control (Waxman, 1993; Kallianes and Rubenfeld, 1997; Bau, 1999) over such women's reproductive and mothering rights, consequently many disabled women's identities were unseen and unquestioned (Zitzelsberger, 2005).
Often, women with physical disabilities are presumed to be unable to cope with pregnancy, birth and motherhood and are counselled not to become pregnant (Tilley, 1998; NDA, 2007). Tait (1986) notes how women with disabilities are generally economically less privileged and socially more defenceless, and how these women continue to be deprived of the ability to reproduce by forced sterilisation, often by means of a hysterectomy. Data on the frequency of sterilisation among women with a disability are sparse. A large-scale study undertaken by Nosek et al (2001) compared the reproductive health of women with a physical disability (n=476) and non-disabled women (n=406) in the United States. It identified that 22% of disabled women had undergone a hysterectomy compared with 12% of non-disabled women (Nosek et al, 2001).
Numerous authors argue that women with disabilities experience a double vulnerability, because of their gender and disability (Tilley, 1998; Lloyd, 2001; Lee and Oh, 2005; Zitzelsberger, 2005; Gavin et al, 2006) resulting in their isolation and marginalisation.
The literature also indicates a concerning trend among attitudes and behaviour of professionals. Women reported being advised and/or offered (unsolicited) immediate termination of pregnancy at the time of diagnosis of their pregnancy (Piotrowski and Snell, 2007). Many women reported being offered additional prenatal anomaly screening (Stern at al, 2002; Piotrowski and Snell, 2007) and, more worryingly, reported feeling pressurised to consent to such genetic screening. This advice, even if portrayed in a benevolent manner, aimed to reduce the risk of inherited disability to the fetus (D'Eath et al, 2005) and frequently left women feeling guilty or selfish if they gave birth to a disabled child (Gillespie-Sells et al, 1998).
Women with some physical disabilities have a higher incidence of complications during pregnancy and birth (Cross et al, 1992; Nunn, 1996; Baker et al, 1997; Nosek et al, 2001; Gavin et al, 2006), thus they are categorised as 'high-risk' and their options for different provisions of care are limited. For example, of 231 women with spinal cord injury aged between 18-45 years, only 50% of those who became pregnant had a vaginal delivery, and many had postpartum complications (Charlifue et al, 1992). In contrast, women with multiple sclerosis (MS) do not appear to experience adverse outcomes in pregnancy (Houtchens, 2007). Despite this, women with MS have many fears and concerns when planning to become pregnant (Smeltzer, 2002), and may need assistance with making their decision (Prunty et al, 2008a).
Some women with disabilities have found maternity care to be disjointed, reactive and delivered in an untimely manner (Albrecht, 2001) and others did not receive gynaecological screening services when necessary (Coyle and Santiago, 2002). Many expressed concerns about genetic inheritance of disability, while others struggled with the decision to forego essential medication for their medical condition to ensure a healthy baby (Baker et al, 1997; Carty, 1998). For women post spinal cord injury, sexual desire remains relatively unchanged when compared to pre-injury desire (Demasio and Magiples, 1999), and becoming pregnant after spinal cord injury is an achievable objective and should not be discouraged (Ehrenberg et al, 2003). In fact, many studies of women with physical disabilities (Greenspoon, 1986; Wanner et al, 1987; Charlifue et al, 1992; Cross et al, 1992; Baker and Cardenas, 1996; Nunn, 1996; Baker et al, 1997) have identified that pregnancy can be relatively straightforward, and medical evidence suggests that spontaneous vaginal delivery should be the preferred mode of delivery provided the pregnancy remains obstetrically uncomplicated (Sasa et al, 1998).
Pregnancy and delivery will, however, require careful monitoring for potential medical complications (Demasio and Magiples, 1999). The most frequently reported complications for which monitoring is necessary include autonomic hyper-reflexia (AH), anaemia, respiratory compromise, urinary tract infection, thromboembolic disorders, and skin breakdown/pressure sores (Greenspoon, 1986; Wanner et al, 1987; Charlifue et al, 1992; Cross et al, 1992; Baker and Cardenas, 1996; Nunn, 1996; Welner, 1997; Sasa et al, 1998; Demasio and Magiples, 1999; Jackson and Wadley, 1999; Ehrenberg et al, 2003; Thierry, 2006; Jackson and Mott, 2007). Preconception counselling is critical for this cohort of women and should address the obstetrical, psychological and social impact of pregnancy (Demasio and Magiples, 1999; Thierry, 2006).
Kallianes and Rubenfeld (1997) express the view that society and the medical establishment have exerted paternalistic control over both disabled and non-disabled women's bodies and reproductive capacities and rights. In the context of women with mental health difficulties, such control was further exacerbated by, firstly, the eugenics beliefs that mental illness had a strong genetic component, and that procreation among people with mental health difficulties would lead to social degeneracy and 'race suicide' (Shorter, 1997; Whitaker, 2002). Secondly, women with mental health difficulties were portrayed as hypersexual, predatory and 'temptresses' (Showalter, 1985). Consequently, individuals who experienced mental health difficulties were controlled through institutionalisation, with staff being instructed to maintain gender segregation, and guard against any 'illicit' associations between men and women (Showalter, 1985; Apfel and Handel, 1993; Busfield, 1996). Although celibacy was the official rule to be observed, Chesler (2005) noted that women in institutions were often sexual victims and not protected from 'rape, prostitution, pregnancy, and the blame for all three' (Chesler, 2005:pg. 98).
Prohibition of marriages for certain groups of people, including 'lunatics' and 'imbeciles' was introduced in the United States of America (U.S.A.) and many European countries during the early 1900s (Krumm and Becker, 2006). Taken to the extreme, eugenic arguments were made for the complete removal of ovaries and testes (Barr, 1912), and in some countries, degeneracy theory gave rise to such radical measures as laws that authorised sterilisation without informed consent. Shorter (1997) suggested that it was only after the atrocities of World War II that degeneracy theory and reference to eugenics became a social and professional taboo. In today's context some people suggest that the drug-induced suppression of sexual desire and the production of hyperprolactinaemia in women, with its impact on fertility, is another more subtle way of maintaining existing power relations and enforcing reproductive control, under the guise of therapy (Vandereycken, 1993; Deegan, 1999). Indeed, Vandereycken (1993) suggests that the image of people having no control over their sexual drives, especially women who experience psychosis, is a factor that influences support for the use of drugs to suppress sexual desire.
Howard (2000) examined, from a historical perspective, the separation of mothers with mental illness from their children. He noted that psychiatric textbooks, written in the first half of the century, predominantly by male psychiatrists, advocated the complete and prompt separation of ill mothers from their children, with little or no reference to the impact of such separation on either mother or child. Grunebaum et al (1975) attribute this practice to a number of beliefs dominant in psychiatric thinking at the time: the belief arising out of psychoanalytic theory that the mother's illness was partly due to her hostility towards her child, a belief that the mother was potentially dangerous with homicidal or suicidal tendencies, and a concern that the presence of a young child on a psychiatric ward would upset the management of the ward. The notion of the 'schizophrenogenic mother', put forward by Fromm-Reichmann as a cause of schizophrenia, gave further support to the belief that mothers who experienced mental health difficulties were dangerous and should be separated (Howard, 2000).
In the culture that stigmatised single mothers and even more so mothers with mental illness, many mothers with mental illness were forced in an atmosphere of secrecy and shame to give up their children. Often, it was considered kinder and easier if the mother never saw the child they were giving up for adoption. Therefore, not infrequently, these mothers gave birth under general anaesthetic and had their babies taken away immediately. In addition, documentation about the pregnancy and birth was poor or non-existent, making it impossible for children to reconnect with their birth mother (Schen, 2005). Apfel and Handel (1993) found in the era of secret adoptions, many of the mothers who were in mental hospitals had no opportunity to mourn the loss of their children, and consequently suffered unresolved grief and profound depression. Some of these mothers experienced exacerbation of their psychotic symptoms at the time of the child's birthday, which frequently went unnoticed by staff as they were unaware of the significance of the date or, indeed, of the woman's status as a mother.
Many theorists have argued that once women were confined to an institution they were generally considered by society to be genderless, asexual beings, with a presumed incapacity or desire to pursue adult roles, such as establish further intimate relationships, have children and mother (Showalter, 1985; Apfel and Handel, 1993; Busfield, 1996). Apfel and Handel (1993) suggest that health care professionals came to view sexuality and reproductive issues as 'troublesome intrusions of the normal into the decidedly abnormal world of the patient' (pg. 2). The portrayal of women with mental health difficulties as asexual, lacking any desire to have children is evident, even today, in the number of mental health services who routinely fail to collect data on whether women attending their service have children (Nicholson et al, 1993; Dipple et al, 2002), or discuss either contraception or the impact of prescribed medication on fertility and sexual function with these women (Dorsay and Forchuk, 1994; Cole, 2000; Higgins, 2007).
For most women, pregnancy and motherhood is a positive psychological process. However, for some women this life changing event can result is a mental health difficulty. It was previously thought that pregnancy somehow insulated and protected women from the pressures of the outside world and their own internal processes. Even if a mental health difficulty had been previously diagnosed, it was believed that it went into 'remission' during pregnancy (Solchany, 2003). We know now that this is untrue and pregnant women are vulnerable to developing, at the same rate, the same range of mental health difficulties such as general anxiety disorder, post-traumatic stress disorder, obsessive-compulsive disorder, depression, substance abuse and psychosis, as any other women (Kelly et al, 2001). In addition, there is an increased risk that previous psychotic illnesses such as schizophrenia or bipolar illness can re-emerge during pregnancy, childbirth and the postnatal period. The converse is also true, with some evidence that adverse obstetric events leads to presentation of schizophrenia in the mother at an earlier age (Kelly et al, 2004).
It is estimated that at least half of the women who give birth, at some point in the pregnancy or in the initial weeks following the birth, will experience changes in their emotions and mood. These changes, a normal part of adjusting to changed circumstances and often subsiding with rest, support and reassurance, should not be pathologised and confused with a mental illness. However, O'Hara and Swain (1996) found that 25% of women who experience what is often referred to as the 'baby or maternity blues' went on to experience depression. It is estimated that between 15%-20% of women will experience some form of depression in the first 12 months postnatally, with an increased risk of life-time depression (Bernazzani and Bifulco, 2003). Lower figures of between 8 and 12% have been found for women within the first 9 weeks of delivery if depression is assessed according to the more stringent clinical diagnostic criteria of the Diagnostic and Statistical Manual (DSM) or the International Classification of Diseases (ICD) (O'Hara and Swain, 1996). Some studies have shown that women who have emergency delivery are between 2 and 6 times more likely to develop postnatal depression (Boyce and Todd, 1992; Koo et al, 2003) although other work disagrees (Patel et al, 2005).
For up to 50% of women who experience life-time depression, postnatal depression was the index episode (Stowe and Nemeroff, 1995). Oates (2007) finds that 10% of new mothers are likely to develop depression in the year following childbirth, of whom between one third and a half will suffer from a severe depressive illness. However, only 0.4% of women who experience a postnatal illness require admission to a psychiatric unit (Edwards and Timmons, 2005). Beck (1998) emphasises the importance of differentiating between postnatal depression and postnatal anxiety and panic disorders. Otherwise, women who have postnatal onset of anxiety or panic disorders may be misdiagnosed and treated for depression. Although research has placed great emphasis on depression in the postnatal period, it is estimated that 15% of women will also experience depression during pregnancy. Brockington (2004) suggests that the widespread use of this term 'postnatal depression' in connection with childbirth may be a means of reducing the stigma associated with serious mental illness. Others are of the view that the tendency is reflective of the biomedical focus of both maternity and mental health services, which neglects the multiplicity of psychosocial problems experienced by women during pregnancy and early motherhood (WHO, 2000; Austin and Priest, 2004).
Psychosis in the early postnatal period - often termed postnatal or puerperal psychosis and much rarer than postnatal depression - affects between 1 to 2 women per 1,000 births (National Institute of Clinical Excellence (NICE), 2007). Some suggest that the term puerperal psychosis should be confined to psychosis beginning within 2 weeks following delivery, to distinguish it from other psychotic disorders naturally occurring in the general population (Coyle, 2003). Postnatal psychosis is considered an emergency and requires an immediate intervention, which usually includes hospitalisation. In a long term study of puerperal psychoses from 1927-1961, Protheroe (1969) found that only 1 of the 114 women he traced had stayed in hospital since being admitted in 1941. In relation to the remainder, 49 women had at least 1 further psychotic episode, 14 of which were related to childbirth. During the follow up period 61 women were known to have 149 further pregnancies. All except 6 of the 104 women traced following discharge were living, or lived until they died, in satisfactory relationships and in reasonably well-kept homes and thus appeared to have had a satisfactory outcome. However, the author traced the long term outcomes of these women using case notes only, which might not have fully documented the psychosocial aspects of these women's lives. The author also examined the family histories of 98 of the women from which no specific genetic predisposition to puerperal psychosis could be identified.
Mental health difficulties during and after pregnancy have implications for the psychological and physical welfare of the woman, fetus/baby and the family. Until recently it was thought that pregnancy exerted a so called 'protective effect' on women's risk to maternal suicide. However, the Confidential Enquiry into Maternal and Child Health (CEMACH) found that mental health difficulties (suicide, or 'accidental' but lethal overdose of drug of abuse) contributed to 12% of maternal deaths in the United Kingdom, with more women dying from the direct and indirect consequences of substance abuse than from other psychiatric causes (Lewis, 2007). The majority of suicides in pregnant and postnatal women occur in the 6 weeks before delivery and the 12 weeks after delivery. As with previous reports, the majority of women who died from suicide were receiving some type of psychiatric care, but not specialist drug addiction services. The report also revealed that many of the deaths took place shortly after a child protection conference, or a child being removed into care.
Although all pregnancies carry risk, especially to the fetus, research suggests that these risks increase where the woman has a mental health difficulty. According to the National Institute of Clinical Excellence severe depression is associated with increased rate of still birth, postnatal specialist care for the baby and low birth weight babies. Maternal psychosis and bipolar disorder appear to increase the risk of infant mortality and stillbirth, and have also been associated with preterm delivery and low-birth weight infants (NICE, 2007). Women who experience eating disorders during pregnancy are more likely to have complications, such as miscarriage, delivery by caesarean section and premature or small babies.
There is now emerging evidence that untreated mental health difficulties in pregnancy may be associated with poorer long term outcomes for children beyond the immediate postnatal period. Studies have shown that untreated or enduring mental health difficulties in the mother may impact negatively on the emotional and cognitive development of the child. A number of studies suggest that children of postnatal depressed mothers are more likely to have difficulties in relationships and attachments. Mothers with a diagnosis of depression are considered to interact less with their infants, and to be less affectively and interactionally synchronised with their children (Cox et al, 1987; Fendrich et al, 1990; Goodman and Brumley, 1990; Hammen et al, 1990; Kelly et al, 1999; Mullick et al, 2001). While not discounting Mullick et al's view (Mullick et al, 2001) that a small number of severely ill women with psychotic symptoms may experience thoughts leading them to harm their children, the tendency within the research to emphasise the cost of the mother's pathology on the development of the child has resulted in motherhood and mental illness becoming synonymous with negative parenting regardless of diagnosis, severity of experiences, support systems and family circumstances and social context (Cogan, 1998; Mowbray et al, 2000). In addition, it is clear that many children are resilient and appear to avoid significant problems, yet very little research has focused on identifying sources of resilience or on what makes for positive outcomes.
The medical model, which has dominated women's experiences of childbirth, has been criticised for pathologising postnatal events and ignoring the social context of many women's lives. Perinatal mental illness is a complex issue, and the social context in which women live and parent plays an important role in its cause, as well as exacerbating existing mental health difficulties and the everyday challenges of parenting. Separation, divorce, lone parenting, relationship difficulties, poor social support, and stressful life events during pregnancy have all been identified as factors contributing to or exacerbating pre- and postnatal mental health difficulties (Whiffen and Gotlib, 1993; O'Hara and Swain, 1996; Borjesson, 2005; Horwitz et al, 2007). The strongest predictors of postpartum mental illness, especially depression, are past history of illness (Verkerk et al, 2005; Kim et al, 2008), low social supports, stressful life events during pregnancy, high levels of birth complications, traumatic births, and relationship difficulties (O'Hara and Swain, 1996). Evidence suggests that low family income, lower occupational status and financial strain are also associated with increased risk (O'Hara and Swain, 1996; Horwitz et al, 2007).
Many of these factors are present in the lives of mothers with enduring mental health difficulties. These issues add to the stresses of parenting and can adversely affect and thwart women's wishes to parent well. Research both in Australia and the U.S.A. reveals much about the difficulties and complexities of women's lives as they cope with the dual demands of motherhood and living with a mental health difficulty. A great number of women enduring mental health difficulties have begun child bearing early, are low income parents, with high rates of unemployment (Nicholson et al, 1998c; Mowbray et al, 2000; Mowbray et al, 2001), are parenting alone, have smaller social networks and live in suboptimal accommodation (Caton et al, 1999; Chernomas et al, 2000; Oyserman et al, 2000). Marital discord, social isolation and conflicts with extended family are also common within this group of women (Oyserman et al, 2000). Congruent with this picture, is a high number of women who reported difficulties paying off debts as well as paying for basic necessities such as food and clothing, which further exacerbated their poor self-esteem and feelings that they were bad mothers (Mowbray et al, 2000).
Research also suggests that women with mental health difficulties experience a significant number of unplanned pregnancies, as a result of failed contraception or lack of use of contraception (Miller and Finnerty, 1996; Barkla et al, 2000). In Barkla et al's (2000) Australian study, 52% (134) of the women with enduring mental health difficulties experienced 'unplanned 'pregnancies, with 25% of these ending in termination. Although these figures may reflect the trend of unplanned and terminated pregnancy in the general population, and the degree of 'wantedness' can change over time, women who have terminations in difficult psychosocial contexts are at high risk of depression. Women with an enduring mental illness are also at a greater risk of being deprived of their parenting role through miscarriage, stillbirth and custody loss (Dipple et al, 2002). Studies have reported that 20-30% of women with prenatal loss of a child (stillbirth or neonatal death) have appreciable depressive symptoms up to 30 months after the loss, with rates of clinical depression in women after a miscarriage ranging from 40-50% (Bernazzani and Bifulco, 2003).
Many mothers with mental illness have experienced adversity and trauma in childhood, such as physical and sexual violence. Experiences such as childhood sexual abuse are associated with depression in adulthood. In addition, the obstruction of attachment in childhood impacts on the ability to form stable relationships in adulthood, and can result in the development of a personality disorder (Miller and Finnerty, 1996; Brunette and Dean, 2002; Bosanac et al, 2003; Dickerson et al, 2004). It is important, therefore, that mental health professionals identify which women clients are parents, so that appropriate, focused parenting services and supports are offered.
While mental health services are now addressing needs for housing, work and education among people with enduring mental health difficulties (Government of Ireland, 2006), they are far behind in responding to the needs of women as mothers (Mowbray et al, 1998; O'Shea et al, 2004). It is evident from the literature that many women routinely seen by the mental health services are not identified as parents and the parent role function is ignored in care and treatment planning (Zemencuk et al, 1995). Nicholson et al (1993) found that few American Mental Health Services routinely collected data on whether women attending services had children and most neglected to ask about family roles and responsibilities. Dipple et al's (2002) study in the United Kingdom also highlighted the inadequacy of women's case notes, regarding their role as mother. This included records with no mention of children, the incorrect number of children, inadequate information to enable mother or staff to contact children easily, and incidents where a major event such as the death of a child was not recorded. This is indicative of the tendency of services to neglect the community and family context of women's lives and the specific psychosocial needs of mothers. It is also indicative of the biomedical paradigm and its focus on the woman as 'patient' as opposed to mother with, consequently, the identity of the woman as 'mentally ill' becoming primary, supplanting all other identities (Oyserman et al, 2000; Montgomery et al, 2006).
The literature on motherhood and mental illness is largely dominated by a professional discourse that portrays mothers with enduring mental health difficulties as 'risky,' incompetent mothers. However, there is a small emerging body of literature that gives voice to these women and recognises that they are capable of effective parenting with support from innovative services and resources. Mothers with severe mental health problems say that motherhood helps provide them with an identity, other than that of being 'mentally ill' (Chernomas et al, 2000; Oyserman et al, 2004; Montgomery et al, 2006), and report that looking after children is rewarding and central to their lives, even though the demands of parenting are considerable (Schwab and Clark, 1991; Mowbray et al, 1995a). Krumm and Becker (2006) point out that frequently women with enduring mental health difficulties, due to educational background, have fewer occupational options in comparison to women without a diagnosis of mental illness. They suggest that this may contribute to these women's desire to have a normal reproductive biography, as motherhood is seen as an expression on 'normality' and a chance to be competent in a valued social role.
Motherhood for some women is an opportunity to be fulfilled and creative- a means of feeling love, delight, warmth and normality. In a study of 24 mothers with mental health difficulties, Mowbray et al (1995b) reported that, for 81% of the women, transition to motherhood was a positive experience and they felt very positive about their children and parenting skills. The mothers described parenthood as a way of promoting personal growth and development and a key outlet for expression of feelings of care and concern. The majority of women (n=22) in Diaz-Caneja and Johnson's (2004) qualitative study said that having children gave them a purpose in life, made them feel fulfilled as women and increased their self-esteem. The significance of having children is also illustrated by women's experiences of parenting as 'the only time they felt like an adult' (Schwab and Clark, 1991:pg. 97). For parents who did not have custody of their children, but had visiting rights, seeing their children was an important focus in their lives (Schwab and Clark, 1991; Joseph et al, 1999).
Motherhood also signified responsibility, with some women expressing concerns about the impact of the illness on their children, and worrying about the children becoming ill, whether from genetic or environmental reasons (Mowbray et al, 1995a; Diaz-Canjela and Johnson, 2004). Being responsible meant protecting and shielding the children from the illness through pretence, downplaying, and camouflage of emotions and distress. By hiding the 'illness' and related distress the mothers believed that they could be viewed as 'normal'. Therefore, their parenting would not be questioned and they would be affirmed by their children and others (Montgomery et al, 2006).
Babies and children also provide a social and community context for mothers, as rearing a child connects the mother with other mothers, schools, playgroups and paediatric health professionals For some women, becoming a mother meant moving from the position of 'stigmatized outcast' to a valued and honoured member of society (Apfel and Handel, 1993). For other women the wish to bear children is enormous, even in the face of previous losses of children or consequence to one's own mental and physical health (Apfel and Handel, 1993). Having children was viewed by mothers as having many beneficial effects on their mental health. Motherhood was seen as a motivating factor to sustain their participation in treatment or engage with psychiatric services in the community in order to prevent relapse (Mowbray et al, 2001; Diaz-Canjela and Johnson, 2004). As Fox (2004:pg. 763) stated 'the bond of mother and child replaced my ache of having to take medication, of dealing with a deadly illness (schizophrenia)'. Other women also reported positive effects, such as giving up drugs and ending bad relationships (Mowbray et al, 2001).
Although degeneracy theory has been discounted within the scientific literature, the idea of people with mental illness marrying each other and bearing children continues to be met with disapproval within society and, in particular, by health professionals. Mothers with a known diagnosis of mental health difficulties report being subjected to high levels of suspicion and surveillance from professionals who visited their homes. Despite this constant 'surveillance,' women do not consider mental health professionals very helpful in assisting them with their parenting role. The focus on the biomedical entity of mental illness and symptom reduction appears to overshadow professionals' understanding of women's experiences and needs as mothers (Oyserman et al, 2000; Montgomery et al, 2006). Health care professionals are perceived as having limited understanding of the distress of mothers, or the challenges they face trying to parent and maintain their mental health. While women described a range of practical and emotional challenges confronting them as parents, most had few discussions with health professionals on these issues. Women report that health professionals are more focused on their deficits as parents as opposed to capabilities, and on symptom control and drug compliance (Montgomery et al, 2006). Parenting role functions are often ignored in care planning and pre-discharge planning, with little attention given to the women's concerns around parenting (Gross and Semprevivo, 1989; Brunette and Dean, 2002). They also recounted incidents, particularly with General Practitioners, where their voice and expertise as mothers was dismissed, further undermining their confidence. Some women felt they were treated as the non-expert in relation to their child because they had a mental health difficulty (Nicholson et al, 1998c; Davies and Allen, 2007).
Although the literature emphasises the importance of health care staff talking to children about the parent's illness, or helping parents to do so, this did not appear to happen. Women frequently returned home from a stay within a mental hospital, to do what they had done before, and without any increased knowledge or skills in parenting (Diaz-Canjela and Johnson, 2004; Montgomery et al, 2006). Women also highlighted the tendency of services to withdraw any practical help offered as soon as an immediate crisis was resolved (Diaz-Canjela and Johnson, 2004). The frequent change in case worker and inconsistency between case workers were considered to militate against any continuity of care and emotional support (Mowbray et al, 2000; Diaz-Canjela and Johnson, 2004). Lindy Fox (1999), in her personal account, describes how health care professionals tended to view her children as the cause of her 'bipolar relapse', thus focusing health care on breaking up the family as opposed to advocating for services or developing a plan of care to keep her family. Overall, services were regarded as offering little continuing support to women who were struggling to look after children. Intervening in crisis when there was a child protection issue and deciding whether children should be taken away was seen as the main functions of statutory agencies ( Diaz-Canjela and Johnson, 2004; Kessler and Ackerson, 2004; Montgomery et al, 2006).
Findings from studies that examined the social and clinical characteristics of mothers whose babies are supervised or removed, suggest that single women with a diagnosis of schizophrenia or other illness involving psychosis, living on low income or below the poverty line, and with low social supports are at particularly high risk of having their baby supervised by social services and/or raised by someone else (Miller and Finnerty, 1996; Howard et al, 2003; Hollingsworth, 2004). In one study, 50% of women with a diagnosis of schizophrenia and 10% of women with bipolar disorder in a South London mother and baby unit were discharged without their children, or discharged under formal supervision from child protection services (Kumar, 1995). In Dipple et al's (2002) study of women attending rehabilitation psychiatric services in Leicestershire (U.K.), 68% (37) of the mothers had at least 1 child they were permanently separated from before the child was 18 years old, and in 11 cases the separation occurred at birth. Only 3 of the 20 women with enduring mental health difficulties in Sands et al's (2004) study, in the United States, had full custody of all their children. The predominant pattern was for the children to be dispersed between a variety of settings - some with mother, father, grandparents, and other relatives, some in foster care, residential care and some adopted. Not surprisingly, a number of the mothers appeared genuinely bewildered about the custodial arrangements of their children and were unsure whether children in long term foster care had been adopted or if they were in a position to do anything to get reunited with their children. In all of the research the recurring theme was of women who felt controlled by a legal and psychiatric system that was insensitive to them as mothers and human beings.
Years after the separation, these women still spoke of their enduring sadness, pain and anger about their loss and were struggling to process and integrate their experience of being judged as an unfit mother (Miller and Finnerty, 1996; Joseph et al, 1999; Chernomas et al, 2000; Dipple et al, 2002). It is noteworthy that the vast majority of women in Joseph et al's survey (1999) felt it important to continue to be involved in raising their children, although the majority (88%) were not currently the primary caregiver, and requested help in getting their children returned to them. Those who had lost custody of their children even to family and friends suffered a powerful stigma associated with not being able to look after their children (Diaz-Canjela and Johnson, 2004). Some women felt the stigma and pain so strongly that they said they frequently lied, when asked if they had children (Chernomas et al, 2000). Although the pain and distress associated with the loss of children can negatively impact on the women's recovery, women in Diaz-Caneja and Johnson's (2004) study described a profound silence on the subject from mental health professionals. In some cases the woman's despair was interpreted as a symptom of illness (Fox, 1999). Nicholson (2005) suggests that, in the United States, child custody issues and the fear of loss of custody or contact with children is sometimes used as a leverage point to get women to comply with and participate in treatments. She highlights the need for further research into the prevalence, circumstances and impact of this ethically questionable practice. No studies were located that explored the impact of custody loss on women with mental health difficulties. The importance of this issue is highlighted by Swain and Cameron (2003) who point out that parents are often unrepresented in court proceedings, and it is seldom that formal court interventions are used to help parents to regain custody of their children. They argue that the assumption that parents with a mental health disability are unable to care for their children must be challenged.
A thorough review of the intellectual disability literature yielded little published research specifically examining the experience of women/mothers with intellectual disability, but did provide an insight into the context within which pregnancy and parenthood in the intellectual disability population is viewed. Two key issues emerged, demonstrating that there are variations in the labels used to classify people with intellectual disability, and there is inconsistency in the defining characteristics under those labels. It was apparent, also, that there was an incremental development of thought around the issue of women with intellectual disability, with an almost chronological emergence of key themes focusing on the attitudes and response patterns to the 'problem' of women with intellectual disabilities; the realisation and acknowledgement that some people with intellectual disabilities had actually become parents; the presumption that parenting by such people was inherently inadequate; and the need to protect their children from abuse and neglect. These themes are described here to illuminate the context within which barriers and facilitators to maternity-related health of women with intellectual disabilities will be discussed in Chapter 6.
'Intellectual disability' is one of a number of terms used internationally but is not universally agreed as being appropriate (Eastern Regional Health Authority (ERHA), 2002). The other most commonly encountered terms include: learning disability; developmental disability; mental and severe mental impairment; and mental retardation. The use of labels is somewhat dynamic; thus, in the past 25 years the United Kingdom has changed from 'mental handicap' to 'learning difficulty' to 'learning disability' whilst 'mental and severe mental impairment 'are the terms used within the United Kingdom mental health legislation (United Kingdom 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 of Health, 2003) have changed usage from the terms 'mental handicap' and 'learning disability' to 'intellectual disability.' The 'mental handicap' label is contained within the current Irish Nursing Act (Government of Ireland, 1985; Keenan, 2007) but not in the more modern Disability Act (Government of Ireland, 2005). In the United States, 'mental retardation' is still widely used, although there is evidence within the literature of increasing use of the terms 'developmental disability' and 'intellectual disability' (Schalock et al, 2007; Wehmeyer et al, 2008). The American Association on Mental Retardation changed its name on 1st January 2007 to the American Association on Intellectual and Developmental Disabilities (AAIDD) (AAIDD, 2008).
In the past century and a half, additional social policy labels have applied to this group of people. These included terms such as 'developmentally disabled', 'feeble-minded', 'idiot', 'imbecile', 'mental defective', 'mentally retarded' and 'vagabond'. (United Kingdom Parliament, 1913; Stainton, 1992; Trent, 1994; Cocks et al, 1996; Walmsley, 1997; 2000; Walsh and Gash, 2004; Grant et al, 2005). Gates et al (2007) adds 'moral defective' and 'uneducable' to this list.
The label utilised and what it means has varied over time and legislative boundaries. From the literature, it would appear that, as social policy shifted over the last century from care based on the bio-medical model, emphasising segregation and institutionalisation, to a social and rights based approach, the terms existing at the time became outdated and changed. Furthermore, negative overtones have developed around many of the labels that were previously used and so these have become unacceptable (ERHA, 2002; Gates, et al, 2007). Thus, for example, the previous medical and legal classifications 'idiot' and 'imbecile' (United Kingdom Parliament, 1913) are now generally considered to be insulting and undignified terms.
While the label and meaning(s) attached to this heterogeneous group of people may vary over time and between societies, the general consensus in the published literature is that a number of commonalities exist (Gates et al, 2007; MacKenzie, 2007) and the following recurring themes have emerged (WHO, 1992 and 1993; Jenkinson, 1996; American Psychiatric Association, 2000; Scottish Executive, 2000; Department of Health, 2001; Welsh Office, 2001; ERHA, 2002; New Zealand Ministry of Health, 2003; Department of Health and Social Services and Public Safety Northern Ireland, 2005; Salvador-Carulla, 2008):
In relation to diagnostic criteria and classifications of intellectual disability, the Diagnostic and Statistical Manual of Mental Disorders (DMSIV) TR Edition (American Psychiatric Association, 2000) and the International Statistical Classification of Disease and Related Health Problems 10th Version. (ICD 10) (WHO, 1992) are the most commonly used.
The Disability Act (Government of Ireland, 2005) uses the term 'intellectual disabilities', but does not define it. The Criminal Law (Sexual Offences) Act (Government of Ireland, 1993) uses the term 'mental handicap', but it also is not defined. However, Section 5(5) of the Act ('Protection of mentally impaired persons'), does define the term 'mentally impaired', a heading which a small proportion of people with an intellectual disability may at times come under. In this section "mentally impaired" is defined as "suffering from a disorder of the mind, whether through mental handicap or mental illness, which is of such a nature or degree as to render a person incapable of living an independent life or of guarding against serious exploitation." (Government of Ireland, 1993:pg. 5(5))
There is one legal definition of intellectual disability in United Kingdom, found in the Mental Health Act (United Kingdom Parliament, 1983). However, this only defines people with intellectual disabilities (mental or severe mental impairment) who exhibit aggressive or seriously irresponsible behaviour (a minority of the intellectual disability population). According to Gates et al (2007), this is the first time in the United Kingdom that intellectual disability and mental ill health have been defined as separate legal entities.
Intellectual disability is therefore a contested label with variations in meaning. It could be argued that because of this and the fact that, as Clarke (2006) asserts, little is known of the perspectives of people with intellectual disabilities, serious hurdles exist in terms of understanding the limitations of health care provided and the development of more effective, quality services.
The literature demonstrated an incremental development of thought pertaining to the issue of women with intellectual disability. Themes emerged chronologically, describing the attitudes and response patterns to the 'problem' of women with intellectual disabilities. Typically, these patterns centred firstly on the congregation and segregation of women (and men) with intellectual disabilities followed by the realisation and acknowledgement that some people with intellectual disabilities had, in fact, become parents. This gave rise to the perceived need to control the reproductive capacity of such women through their sexual segregation or, indeed, sterilisation. It was presumed that, where women with intellectual disabilities became pregnant, their parenting would be inherently inadequate, legitimising the need to protect their children from expected abuse and neglect. Whereas it may be considered that societal attitudes have shifted considerably, it is interesting to note that the pregnancy and maternity-related health needs of women with intellectual disabilities remain largely unaddressed. Three important historical themes, eugenicist policies, the presumption of parental inadequacy, and negative attitudes to the sexuality and reproductive rights will be addressed within the context of their role as barriers and facilitators to the maternity-related health of women with intellectual disabilities.
Initial concerns regarding the 'problem' of women with intellectual disabilities emerged from the amalgam of religion, positivism and science that constituted 19th century eugenics. This movement sought to stem the 'multiplication of the unfit', and their perceived threat to society (Sheerin, 1998a). Indeed, the eugenicists deeply held the belief that 'all poor, feebleminded women at large become mothers of illegitimate (feebleminded) children soon after reaching the age of puberty' (Neff et al, 1915 cited in Brandon, 1957a:pg. 711), and that the multiplication of the 'unfit' threatened humanity with 'economic and biological disaster' (Tredgold, 1929 cited in Brandon, 1957a:pg. 711).
The focus centred directly on one specific group: poor, intellectually disabled women of childbearing age. The responses to this were prophylactic institutionalisation - segregating the intellectually disabled women from society - and prophylactic sterilisation - removing from them the possibility of having any reproductive future (Pfeiffer, 1994). Rafter (1992) argues that the eugenics movement in the United States, under the leadership of Josephine Lowell, proceeded to the point of actually criminalising the very fact of being female and intellectually disabled. Scior (2003) suggests that, for these women, gender and disability became inextricably linked. Whereas the eugenicist perspective may be considered to be one that pervaded late 19th and early 20th century thought, its role in the development of services was so pervasive and important that many services and indeed, Western society itself, Sheerin (2006) argues, has found it difficult to discard its remnants. According to Stansfield et al (2007) this is evident in the continuance of segregation and, until recently, even sterilisation of people with intellectual disability in the United Kingdom. Broberg and Roll-Hallson (2005) comment similarly on other countries. Stehlik (2001) argues that such actions are examples of an increasing trend of 'corporate/neo-eugenics'.
Despite all attempts to remove the procreative capability of women with intellectual disability, it became clear that the eugenic policies were not achieving their aim. This failure is evident in the literature of the mid-20th century, which increasingly focused on the reality that some women with intellectual disabilities, both in institutions and in society, were becoming pregnant and giving birth to children (Hathaway, 1947; Mickelson, 1947, 1949; Brandon, 1957a, 1957b). This realisation did not, however, bring about a significantly changed attitude towards women with intellectual disability (Abramson et al, 1988), but rather refocused the attention on efforts and strategies to deny their parenting capability. Thus, Espe-Sherwindt and Crable (1993) argue that several myths developed around the reality:
It is likely that these issues served to re-instil the fear that was inherent in eugenic thought (as is clear from the first 2 statements), whilst introducing a further concern regarding the security of children born to persons with intellectual disability. Whereas the first and second issues were quickly disproved (Brandon, 1957a; Reed and Reed, 1965; Gillberg and Geijer-Karlsson, 1983; Koller et al, 1988), fears regarding the adequacy of parents with intellectual disabilities remained, and probably still remain, in question (Fantuzzo et al, 1986).
It is clear from the literature that many such people are striving to provide for their children, often in very difficult situations, and a significant number of these parents are mothers, parenting alone following either abandonment or sexual assault. A critical review of the literature found that the effects of sexual violence against women with intellectual disability appeared to be comparable to those experienced by similarly traumatised women in the general population. Aggression and self-injury were sometimes exhibited and psychiatric symptoms included depression, anxiety and indicators of traumatic stress reaction (Sequeira and Hollins, 2003). Struggling with the after-effects of such trauma could, understandably, prevent women with intellectual disability from displaying adequate parenting. It is recognised that amongst women with intellectual disability who are parenting alone, there is a tendency towards poorer health (IASSID SIRG, 2008), which could also hinder the quality of their parenting activities.
Keltner et al (1995) suggest that not only is there a lack of support, but barriers exist to these women accessing public service supports, including the fear of their children being taken into care, and lack of accessible information. Keltner et al (1999) however, in a study of child outcomes, which attempted to remove poverty as a confounding factor, suggest that poverty is not the main factor in this regard. Further research is needed in this area but, whatever the causes, what emerges from the literature is that mothers with intellectual disabilities often struggle against numerous disadvantages to provide adequate parenting, yet many succeed. An explorative study found that around 1.5% of persons with intellectual disability in the Netherlands were parents, mostly those with mild disabilities. In the eyes of their professional care-givers, 33% were definitely "good enough" parents, 51% were "not-good-enough" parents and in the remaining 16% there was no clear decision. The authors identified that a high quality social network, acceptance of the parents in the community and their ability to follow advice were key elements to success in parenting (Willems et al, 2007).
The impact on children of parental inadequacy among parents with intellectual disabilities has been widely studied (Brandon, 1957a and 1957b; Borgman, 1969; Gath, 1988; Pixa-Kettner, 1999; May and Simpson, 2003). Amongst the effects identified are neglect (Crain and Millor, 1978; Katz, 1992), abuse (Helfer and Kempe, 1974; Schilling et al, 1982), and inadequate or inappropriate nutrition (McConnell and Llewellyn, 2000). It is not clear, however, whether these child outcomes are related solely to parental inadequacy or to the situational poverty and lack of support that is frequently the backdrop to such parenting (McConnell and Llewellyn, 2000). It has also been shown that there is a higher prevalence of unrecognised medical problems and developmental delay due to inadequate early stimulation in the children of parents with intellectual disabilities (Feldman et al, 1985). Again, it is difficult to relate this directly to the adequacy of the parenting provided, and studies suggest that these are, rather, related to lack of support and difficulties in accessing services and information (Keltner et al, 1999; McConnell and Llewellyn, 2000; IASSID SIRG, 2008; Mayes et al, 2008). This view is supported by the fact that many interventional studies providing parenting training and support have been found to improve parenting outcomes (Feldman et al, 1985; Tymchuk, 1985; Fantuzzo et al, 1986; Tymchuk et al, 1988; Llewellyn et al 2003).
The immediate response to potential or actual inadequate parenting by parents with intellectual disabilities has, in the past, involved the almost systematic removal of children from the parents' custody (McConnell and Llewellyn, 1998; Sheerin, 1998b; Glaun and Brown, 1999); this is evidenced by the findings of Mickelson (1949) and, more recently, those of Accardo and Whitman (1990). In particular, it is the fact that over one fifth of families in this latter study, who had children removed from them, had provided satisfactory care, which causes concern. Feldman (1986:pg. 778) concludes that 'retarded parents are probably currently the only group of citizens whose children are routinely taken away at birth, before any evidence of child maltreatment can be established to justify apprehension.'
Women with intellectual disability are often considered either asexual or hypersexual, with little or no ability to control their sexual expression, yet they have the same sexual needs and desires as people without intellectual disabilities (Mitchell et al, 1978; Aunos and Feldman, 2002; Keenan, 2006b). However, through the ages, women with intellectual disabilities were perceived as 'the most serious threat to society' (Trent, 1994:pg. 179), because they were viewed as abnormally fertile women who gave birth to defective children and spread sexually transmitted diseases (Jones, 1986; Perkins et al, 2002), therefore making them subjects 'to be dealt with' (Mental Deficiency Act, 1913 cited in Walmsley, 2000:pg. 65). They were often separated by sex or sterilised to prevent procreation (Stainton, 1992; Trent, 1994; Cocks et al, 1996; Walmsley, 2000; Black, 2003; Broberg and Roll-Hansen, 2005; McClimens, 2005; Keenan, 2006a).
Walmsley (2000) has found evidence in Bedfordshire 1916-1918 to indicate that women with intellectual disability were more likely to be institutionalised and their sexual conduct was a major factor in this decision. Perkins et al (2002) suggest that the extended families of mothers with an intellectual disability are often the subject of discrimination, with the disability of their relative perceived as an individual pathology to be dealt with by medicalising and hospitalising them (Oliver, 1990; McClimens, 2005). Such women were also viewed as a social problem and the focus of rehabilitation (Simmons, 1978; Trent, 1994; McClimens, 2005; Keenan, 2006a).
Against a background of increasing medicalisation of childbirth, where women with disabilities may be at risk of being viewed through a medical lens solely because of their particular disability, the various aspects of different disabilities were examined. The historical development and improvement of national data collection and statistics is noted and should provide more useful data in the future. Within the limits of the published research, the background and context for the care of women with all types of disabilities showed a history of discrimination lasting to the present day. Evidence from the literature suggests that society has, in many instances, undervalued women with disabilities, has exerted control over their sexual and reproductive lives and has, at least in the case of women with mental health difficulties, exacerbated their difficulties. Mothers with intellectual or mental health disabilities, in particular, are often separated from their children, despite a lack of evidence of harm or the existence of positive benefits to them of performing the mothering role. Societal attitudes such as these may very well lead to barriers for women with disabilities in accessing suitable services in pregnancy, childbirth or motherhood. The following chapters examine this issue in detail, and identify both barriers and facilitators that exist for these women.
[1] “Domino” stands for DOMiciliary IN and Out. Women with no risk factors receive antenatal care in the community from a team of midwives, one of whom visit the woman in her own home in early labour, assists her through labour and escorts her to hospital in time for the birth. The woman and her baby may then go home again 6 hours later, if there are no complications, and they are visited by one of the team midwives daily for 5-7 days in the postnatal period.
[2] These categories are not mutually exclusive.