Research in the areas of sexuality, reproductive freedoms and motherhood for women with disabilities in Ireland is limited. International literature converges on debates surrounding rights (the right for disabled women to be sexually active, to reproduce, and to be mothers), the tension between the ways medicine and society construct disabled women's sexuality, reproduction and mothering ambitions, medical and societal control over disabled women's sexuality, and their reproductive and mothering rights, and finally, barriers to disabled women's sexual expression, reproductive and mothering aspirations. This chapter will explore these themes in light of the barriers and potential assistance and support to disabled women as sexual selves possessing the right to have children and become mothers should they wish.
Mitchell (2001) argues that discussion around sexuality and disability brings a 'hypervisibility' that results in invisibility and exclusion for disabled women. Categorised and excluded as disabled or different, many women's sexual identities were unseen and unquestioned (Zitzelberger, 2005). According to Waxman Fiduccia (2000), disabled women are a sexual minority due to their 'reproductive irrelevance' and the presence of threat in their nature as women and in their nurture as potential mothers (2001: 169). Shakespeare (2000) notes how prior to the 1980s the private lives of disabled women were not seen as 'worthy of concern' and it is only very recently that they have come to the fore in discussions surrounding sexuality. This is particularly true for lesbians with disabilities who face societal and cultural prejudices not only because of their sexual orientation but also their disability and are therefore, challenged with a 'double prejudice for acceptance and equal rights' (NDA: 2004: 13). It has been argued that sexuality for disabled women is often the source of deep oppression and pain and it is often easier for disabled women to talk about formulating strategies for changing discrimination in employment or education than confronting their exclusion from sexuality and reproductive issues (Finger, 1992).
According to many disabled women authors, there is a great deal of negativity, prejudice and misunderstanding about disabled women's sexuality. Disability discourses have been framed in medicalised and human rights terms, much to the neglect of sexuality (Nisha, 2005). Stereotypes of disabled women have made reference to their 'asexuality', their non-sexual child-like dependency and in the case of mentally ill women presents them as 'dangerous women' out to ensnare unsuspecting men (Gerodetti, 2003). These stereotypes have resulted in many disabled women having poor experiences with misinformed or insensitive health professionals, and experiences of not being supported by family and friends.
Being labelled 'unfit' to parent has been traced to society's fear that 'the very nature of disabled women's biological and social bond with a child will result in the child becoming physically, socially, psychologically and morally defective' (Waxman, 1994:156).
Perceptions of disabled women as child-like dependents of their parents in need of protection has led many women to live lives of isolation, invisibility and dependency, never expected to marry, reproduce or have intimate relationships (Grabois, 2001; Becker et al., 1997). Gerodetti (2003) argues that disabled women are seen as passive in regard to their sexuality and sexual expression and to see them as sexually active is deemed 'unacceptable' by society (2003:5). Disabled bodies, unable to conform to the 'ideal' are subjected to oppressive practices and are denied a sexual role by society (Nisha, 2005).
According to Waxman (1994), dominant social fears and stereotypes surrounding disability and reproduction has led medicine to try to control and prevent disabled women's pregnancy and sexual expression through institutionalisation, gender-based segregation, forced sterilization and misinformation on contraception. Framed as a protective measure for the disabled woman, sterilization was actually motivated by a need to control disabled women's sexuality and reproduction. Gerodetti (2003) notes how historically many women with learning disabilities were given the choice of either sterilization or being put in a work house or having their poor relief withdrawn. Disabled women's sexuality is also controlled in the social sphere through lack of available information and difficulty in accessing any available information. Yoshida et al. (1999) notes how not having access to knowledge and information about sexuality can have a negative impact for disabled women who are trying to develop intimate relationships.
Disability stereotypes can impact on how disabled women's sexuality is viewed and considered in healthcare and social work settings. Many medical practitioners reproduce the sexual stereotypes associated with disabled women. Those who treat women with disabilities for their reproductive health care needs often assume women with disabilities are 'asexual', especially if the woman has a severe disability (Grabois, 2001; Nosek et al, 1996). By treating disabled women as asexual beings, health professionals often do not ask the standard questions one should ask in a reproductive health care setting.
Discriminatory attitudes surrounding sexual orientation can also impact on women with mental health difficulties and how they view their sexuality. A qualitative study carried out by King and McKeown (2003) on the experiences of lesbian, gay and bisexual mental health service users in England and Wales found that more than 40 per cent of lesbians with a mental illness felt that mental health professionals expressed negative reactions to and held ambivalent views towards their sexuality.
Vansteenwegen et al. (2003), in their quantitative study of the comparative sexual experiences of 167 disabled and non-disabled women in Belgium, found that disabled women have a more negative attitude to their sexuality than non-disabled women and that the disability was the crucial factor in influencing negative sexual attitudes. Subscribing to negative stereotypes was seen to hinder disabled women's freedom for sexual expression.
Walter et al (2001) undertook a quantitative study in the US looking at knowledge of sexuality and reproductive health among a group of 946 women with and without physical disabilities. They point out that attitudinal barriers such as the belief that disabled women are 'asexual' may impede the development of disabled women's sexuality and their sexual sense of self (Walter, 2001). Shakespeare (2000) notes how being sexual demands self-esteem, confidence and the ability to communicate. Many disabled women, devalued and excluded by society, do not have the opportunity to take on feelings of self-love and self-worth. Nisha considers that feelings of shame and inappropriateness brought on by having an impaired body can block disabled women's sexual expression and have a significant impact on their sexual relationships (2005).
It is often perceived by health professionals and wider society that disabled women are devoid of sexual needs and wants and therefore do not require information on sex and sexuality. In Vansteenwegen et al's study (2003) it was found that disabled women had the same sexual needs as non-disabled women but lacked the same level of sexual experience. Furthermore, the negative attitudes experienced from health professionals and family members to disabled women's sexuality resulted in their own views of their sexual selves becoming negative.
It has been demonstrated that children acquire their sexual knowledge from a variety of sources, including parents, teachers, peers, and the media (Walter et al, 2001; Grocke & Smith, 1995). Their attitudes, feelings, and experiences as well as the information they receive dealing with sexual matters are greatly influenced by the extent of their emotional ties to their parents, siblings and others.
Sex education programmes that target young girls and women with disabilities are largely absent in Ireland. Health education (including sex education) classes have not been geared towards the sexual health of girls with disabilities, and in some cases girls have been excluded from such classes (ECNI, 2003). According to Fullerton (2004) in a review of effectiveness research promoting positive adolescent sexual health, vulnerable groups of young girls are not receiving adequate sex education. Consideration therefore should be given to developing specific programmes that access these groups such as outreach programmes and counselling in healthcare settings.
Hyde & Howlett (2004), in their study on teenage sexuality in Ireland, are also critical of the current model of relationship and sex education in Ireland, which they argue, does not accommodate all sexual and interpersonal relationship types. Irish schools have the flexibility to deliver relationship and sex education (RSE) programmes in a way that is in keeping with school policy, and where parents, teachers and management authorities are consulted about the manner of delivery and content of the module. They argue for the introduction in Ireland of a sex education programme, based on the Radical Health Education model, where there is active participation by the students themselves in terms of defining the issues that are of concern to them rather than a top-down approach where others in authority set the agenda (2004).
Walter et al have argued for the evaluation of sexual education programmes in second-level schools in the US to examine whether these programmes promote the idea of disabled women as 'asexual' and to develop a more inclusive programme that embraces sexuality as an intricate part of disabled women's lives (2001).
While not specifically focused on the experiences of women and girls with learning disabilities, research has been carried out in the Irish context into knowledge of issues concerning sexual and personal relationships among people with learning disabilities. This study involved focus groups with women and men with learning disabilities aged under 18 and from 18-30 years, as well as their parents and caregivers. It emerged that sex education and knowledge of concepts related to sexual intercourse and intimate relationships was poorer for younger people with disabilities (Evans et al, 2004). The authors argue that there is an urgent need for early intervention in relation to sex education for people with learning disabilities and for the development of guidelines on issues relating to sexual and personal relationships. In the same study, over 25% of parents of people with learning disabilities said that to their knowledge their child had not received sex education.
Regarding current practice, the Irish Sex Education Network (ISEN) runs workshops and symposiums with primary and secondary school teachers, parents' councils and interest groups on issues of legality, safety and the promotion of positive relationship and sexuality policies for people with learning disabilities.
Among disabled women, the lack of opportunity to participate or socialise with their peers may influence their perceptions of themselves as sexual beings, their knowledge of sexual intercourse, intimacy and relationships, reproduction, and safe sex practices, essential to quality sexual health and sexual self-expression. This lack of knowledge can result in feelings of confusion, guilt and low self-esteem (Nisha, 2005). Walter et al's (2001) quantitative study, as in Vansteenwegen et al's research (2003), found that disabled women were generally similar to their non-disabled peers in acquiring knowledge about sexuality and sexual practices but had less sexual experience. The 504 women with disabilities that were surveyed mainly received their information on sexuality from other disabled women and counsellors. Sexuality was virtually absent as a topic of conversation in the family home and in healthcare settings. In Veltman et al's (2001) study of 123 disabled women's reproductive and health needs in Canada, only 28% of respondents had discussed their sexuality with health professionals. Gillespie-Sells et al (1998) in a UK study found that almost half of the 330 women with disabilities who participated in their research felt that they needed more information and resources to help them to understand better and to resolve issues regarding their sexuality.In McCarthy's (1999) small-scale study of 17 women with intellectual disabilities only five of the participants had received formal sex education.
An area of concern identified in the literature is that of capacity to consent to sexual relations. According to the Law Reform Commission (2005) in Ireland, if sexual development and reproduction are possible then it must be legally acceptable for women with intellectual disabilities to enter into sexual relationships. However, they note that this is challenging when questions are raised regarding women with disabilities' capacity to consent to sexual relations and where exploitation of such consent occurs.
Sexual segregation and lack of privacy in institutions may inhibit sexual intimacy for women with psychiatric disabilities even when desirable partners are available (Cook, 2000). Shakespeare (2000) notes that for many disabled women in institutions 'sex wasn't even part of the story' (2000:161). Sexual expression for disabled women may also be hampered by medicines they take or by medical procedures they have undergone. Women with psychiatric disabilities taking medication can experience diminished sexual performance and desire, causing inorgasmia (Cook, 2000). Post-operative effects of sterilisation on women with disabilities may also inhibit free and comfortable sexual expression.
Environmental factors such as a lack of opportunity to socialise in the same manner as an able-bodied person may hinder disabled women's development of sexual relationships and the development of their sexual identity, and 'delay' their sexual experience (Walter et al, 2001). Shakespeare (2000) notes that many people meet potential partners at college, work or in social spaces. However, disabled women often do not manage to go to college, or to work, or achieve access to public spaces because of physical and social barriers. This is even more problematic for lesbians with disabilities. Participants in a workshop on sexuality and difference at the Sexuality, Disability and Relationships Conference held in Ireland in 2003 pointed out that many places where lesbians and gay men meet socially are inaccessible to people with disabilities (NDA, 2005a).
Previous research has tended to prioritise the medical aspects of disabled women's sexuality such as sexual functioning, and use of contraception to the neglect of psycho-social issues such as intimacy, communication, sexual expression, identity and relationships (Yoshida et al, 1999, Shakespeare, 2000). Esmail et al (2001), in research carried out in Canada, note that issues of sexual intimacy, love and relationships for disabled women are rarely addressed yet are key factors in shaping sexual identity.
Nosek et al. (1995) found that psycho-social factors had a substantial influence on participants' sexuality and sexual functioning and concluded that self-esteem, self-image, social status and psychological variables were the best predictors of sexual activity, not physical functioning.
Shakespeare (2000) notes how sexuality is highly dependent on feelings of self-esteem, confidence and the ability to communicate one's sexual feelings and needs. In being excluded from many aspects of social life, disabled women often do not have the prospect of developing sexual self-confidence or communicating with those they are sexually attracted to. Cook (2000) argues that societal repression of women's sexuality in general greatly affects women with psychiatric disabilities, who internalise negative attitudes about themselves as sexual beings with sexual needs. Women with psychiatric disabilities have particular needs and issues regarding intimacy and sexuality because of higher rates of childhood and adult physical, sexual, and emotional abuse. As a result, many women have trauma-related needs that remain unaddressed in adulthood, which can interfere with the ability to establish relationships or engage in fulfilling sexual activity.
The values and customs of different cultures can also affect beliefs about sexuality and reproduction (Walter et al, 2001, Yoshida et al, 1999). Yoshida et al (1999), in a Canadian study examining the impact of culture on disabled women's sexuality, found that culturally-embedded stereotypes of disability constrained their sexual expression and sexuality and also their opportunities to engage in marital and parental relationships. They argue that when disability, sexuality and culture intersect, women with disabilities feel unable to express themselves as sexual individuals. Women spoke of the sensitive nature of sexuality and disability among their cultures and how there was a lack of sensitivity of their sexuality from family and health professionals alike. Nisha (2005) argues that society at large is the site for negative cultural representations of disabled women's sexuality and that a change in public perceptions is needed to encourage disabled women develop their sexual selves.
Training and educational resources dealing with sexuality issues for disabled women would greatly improve sexual expression and sexual knowledge for women with disabilities. A study carried out by Beckman et al (1996) into the gynaecological healthcare of 55 disabled women in the United States found that many women with disabilities were not getting the information about sexuality that they needed and advocated training and education for healthcare professionals as well as disabled women.
Sexuality counselling can help disabled women become aware of their sexual identity. Perlesz & O'Loughlan (1998), in an Australian study on the impact of disability in later life on disabled women's sexuality, found that for many of the 32 respondents involved, the provision of sexual counselling can reduce stress and help them construct a positive sexual identity. Esmail et al (2002), in research carried out in the United States, recommend the provision of sexual counselling for women who have recently become disabled and their partners, and go on to argue that this would be beneficial for women who have been disabled since birth.
The National Information Centre for Children & Youths with Disabilities in the United States, the Disabled Women's Network Ontario (DAWN), and the Family Planning Association in the UK have produced pamphlets on sex education for girls with disabilities covering issues including puberty, relationships, reproduction and sexuality. An Australian project entitled 'From Girl to Woman' is run in schools and centres for learning disabilities, where puberty and sexuality is explored with young women with disabilities.
Current provision in Ireland relating to disability and sexuality training and education could be greatly improved. Bonnie (2002), writing in the Irish context, recommends adapting the existing content of personal assistance training in Ireland to include sexuality. The introduction of appropriate relationship and sex education for disabled people in education and long stay institutions in Ireland is required. Walter et al (2001) also argue that sexuality and sexual identity should be addressed within the rehabilitation system for newly disabled women so they have the right information to make informed choices regarding their sexual expression. Finally, parents need education/training so that they can support their disabled daughters' understandings of their sexuality and help them to develop a positive sexual identity.
Existing literature in the area of reproductive health for women with disabilities is mainly targeted at general practitioners and other health care professionals and is focused on topics such as pregnancy, childbirth and fertility. However, the literature neglects to document the specific pregnancy, childbirth and fertility experiences of disabled women (Yoshida et al, 1999). Grabois (2001) notes that the research available in the US on the gynaecological care needs of women with disabilities is somewhat scarce. Wong (2000) argues that in the US there are very few instances where reproductive health care 'fits' the disabled woman and many disabled women are led to seek specialised care from gynaecologists as opposed to general practitioners in their community. Nosek & Howland (1997) note that women with disabilities in the United States have frequently stated that their reproductive health needs are not being met by their doctors.
Examining reproductive rights for women with disabilities is problematic. Feminism has traditionally defined reproductive rights as a woman's right to be free of unwanted pregnancy by obtaining contraception and safe, legal abortion. However, the literature suggests that although disabled feminists agree on these issues, they assert that the right to bear and rear children also falls under the category of reproductive rights. Kallianes & Rubenfeld (1997) argue that the reproductive rights of disabled women are frequently constrained by: the assumption that disabled women are asexual; the lack of appropriate reproductive health care, contraception, and sexuality information; and a social resistance to reproduction and mothering among disabled women. Traditional expectations of a woman's reproductive role are reversed for disabled women. Instead of being socially constructed as 'child bearers' they are constructed as 'childlike'. There is a huge tension between what society sees as protecting disabled women and denying their right to reproduce. Disabled feminists such as Morris (1996) note that having sexual relationships, family relationships, bearing and rearing children are all basic human and civil rights for women but are too often are denied to disabled women. She argues that if such rights were denied to non-disabled women it would be 'the subject of outrage' (1995: 76). According to Fiduccia (2000), disabled women have been frequently denied the right to bear children (through forced contraception and coercive sterilisation), the right to sexual and health education due to exclusionary practice in schools and the right to parent their children through loss of custody once the child is born.
Many disability-rights advocates argue that the 'politics of eugenics' and the myth of genetically-inherited disability underlie the repression of sexuality and reproductive rights for women with disabilities (Shakespeare, 1998, Fiduccia, 1994). Kallianes and Rubenfeld (1997) argue that there are two misperceptions at play here. Firstly, that a child will inherit a disability and secondly, that a disabled woman could not possibly be a 'good' mother (Kallianes & Rubenfeld, 1997; Nisha, 2005). Disabled women writing from a feminist perspective are most troubled by the fact that abortion is actively promoted to prevent the birth of disabled babies. The fact that disability is viewed as a socially acceptable reason for having an abortion further adds to the negative stereotypes held in society of disability and motherhood (Fine & Asch, 1988; Hershey, 1994; Kallianes & Rubenfeld, 1997). In this regard, the promotion of genetic testing greatly exaggerates and emphasises the negative aspects of disability when in reality various research has noted that the occurrence of a genetically-inherited disability is quite rare (Shakespeare, 1998; Hershey, 1994; Prilleltensky, 2003). Johnson (1994) argues that developments in reproductive technology have actually increased control over disabled women's bodies as opposed to giving them more choice. The main issues concerning reproduction for women with disabilities that emerged from the literature were negative attitudes of service providers, access to information and services, and environmental barriers.
The attitudes of health professionals, family members and the wider social network play a role in constraining disabled women's reproductive rights. Negative attitudes held by family and community members to disabled women having children can prevent women from seeking family planning advice and contraceptive information (Yoshida et al, 1999; Welner, 1998). Negative attitudes held by health professionals towards disabled women having children represents a barrier to disabled women accessing reproductive health services. Kallianes & Rubenfeld (1997) highlight the struggle disabled women in the US have in finding reproductive health-care providers who are sensitive to their needs. Westbrook & Chinnery (1995) examined the childrearing experiences of disabled and non-disabled mothers in Australia and found 36% of disabled mothers received negative reactions to their pregnancy from health professionals, compared to 9% of non-disabled women. A number of factors interact at a societal and medical level to deny disabled women reproductive freedoms. Societal stereotypes of the disabled woman as 'asexual' have led to the belief that many disabled women physically cannot have sex and are therefore incapable of becoming pregnant or giving birth. Beliefs that disabled women are childlike dependants also gave rise to the view that they could not possibly become mothers and look after a child as they are in need of assistance themselves (Kallianes & Rubenfeld:1997). Stewart et al. (2002), in a report to the Ontario Women's Health Council, note that health professionals can also reinforce negative societal stereotypes in their contact with disabled women. Prilleltensky (2003) points out that until very recently medical and professional literature was virtually silent on issues pertaining to the sexual functioning and reproductive health of disabled women, while in private offices, doctors tended to discourage women with disabilities from having children.
Beliefs connected with their need to protect disabled women and girls can result in parents and healthcare professionals withholding information about sexuality and reproduction. Research by Nosek and Howland (1997) in the United States demonstrated that healthcare professionals who subscribe to disability stereotypes such as asexuality can withhold valuable information or not be in possession of the correct information. This can have a serious impact on disabled women's right to adequate reproductive health care. Welner (1997) highlights the fact that some sexually transmitted diseases (STDs) are extremely hard to detect and health care professionals' perceptions of disabled women as 'not sexually active' may lead to misdiagnosis and endangerment of disabled women's sexual health. Coercive sterilisation has been tolerated under the guise that it protected disabled women from pregnancy arising from sexual abuse and rape yet such medical intervention impedes disabled women's reproductive right to have children and become mothers in the same way forced use of contraception or abortion does (Kallianes & Rubenfeld, 1997).
Not having adequate information can have damaging effects on disabled women's sexual health. Bergman and Welner (1995), in their qualitative study of disabled women and sexual intimacy in the United States, found that if opportunities for sexual intimacy arise some women may be insecure about their sexual identity and be reluctant to ask their partner to use contraception for fear of 'scaring them away'. Welner (1997) points out that for menopausal women with disabilities, their symptoms may be seen as symptomatic of their disability. A lack of adequate sexual and reproductive health information could prevent women with disabilities from seeking urgent medical care and dismissing symptoms of the menopause as symptoms of their disability. In research carried out with 30 women in their 40s, 50s and 60s in the UK, it emerged that the majority of general practitioners (73) who participated in the GP survey had little or no experience of treating women with learning disabilities for menopause-related concerns. In addition, staff in learning disability services were concerned about the general lack of good medical attention often experienced by people with learning disabilities and consequently expressed concerns that medical staff may not take menopausal symptoms seriously for women (McCarthy, 2002).
Communication difficulties can also impede disabled women's access to reproductive information and services. Grabois (2001) argues that visually impaired women and women who have a hearing impairment are faced with communication problems when it comes to interacting with health professionals. Instead of having empowered access to their own reproductive health care, they are often relayed information by an accompanying able-bodied person who may not have their best interests at heart. Research carried out in the UK by Brown & Gill (2002) found that the lack of alternative communication formats (such as sign language interpreters, and information in Braille or via audiotape) for women with sensory or communication impairments, and of programmatic supports to assist women in making medical appointments, can impact significantly on disabled women's access to health services.
The limited data that exists on access to health services in Ireland for women with disabilities suggests that disabled women are receiving less than adequate preventative health services including breast examinations, mammograms or Pap smears in comparison to other European countries (NCWI, 2005; Disability Federation of Ireland, 2005; D'Eath et al, 2005). D'Eath et al (2005) in examining the health inequalities for 30 disabled people in Ireland found that there was a perception amongst participants that women, particularly with intellectual disabilities, were not in need of specific screening services, for example for cervical cancer. For women with intellectual disabilities who did access screening services the barriers reported were due to a lack of awareness on the part of personnel carrying out the procedure. Environmental barriers were reported by women with physical disabilities including the requirement for the patient to be in a standing position for the mammogram procedure, and the non-availability of assistive equipment to transfer a patient to a bed or a couch.
Many studies have found that disabled women are less likely to access sexual and reproductive health services compared to their non-disabled counterparts. Djuretic et al (1999), in a study of 336 women with learning disabilities in the UK, found that 19% of women with learning disabilities have undergone a smear test compared to 77% of non-disabled women. In a study carried out with 500 disabled and non-disabled women in the United States, Nosek & Howland found that women with physical disabilities were less likely to undergo cervical smear tests than non-disabled women because of environmental, attitudinal and information barriers (Nosek & Howland, 1997). In a comparative study of women with and without learning disabilities, King (2002) surveyed 2,688 disabled women over 40 in the United States and found that they were much less likely to undergo a mammogram as part of a routine check-up than non-disabled women of a similar age. Broughton & Thomson (2000) found that the majority of the 52 women with learning disabilities in their UK study were unable to understand the purpose of sexual health examinations such as smear, STD and breast cancer screening tests, which the authors link to a lack of sexual and reproductive health education. The majority of women in McCarthy's (1999) study on sexuality and women with learning disabilities had no knowledge of STDs or why they occurred.
Discussions around sexual health and the detection of STDs by health professionals were found to be a concern for disabled women. Veltman et al (2001) noted that only 15% of 123 Canadian disabled women in their study had discussed the subject of sexually transmitted diseases with another family member or health professional rather than discussing it with other women with disabilities. Finally, Stewart et al (2002) note that sensory impairment in disabled women may limit their ability to detect symptoms of sexual health problems.
Many disabled women have difficulty finding reliable contraceptive information and may have problems finding a suitable method of contraception for their particular disability or, in the case of women with learning disabilities, may have problems understanding its proper uses. (Nosek et al, 1998, Stewart et al, 2002). Nosek et al's study in the US found that little is known about the safety or convenience of various methods of contraception, 30% of women with disabilities (of a sample of 475) believed that they had been given inaccurate information about birth control by their physicians, in contrast to only 9% of the non-disabled group (406 in the sample) (2001). Although disabled women are frequent users of the Canadian health service (Prilleltensky, 2003), numbers of visits made by them to family planning clinics for contraception and reproductive advice are low. Waxman Fiduccia (1994) found that 36 out of 162,066 family planning visits during a six-month period in Los Angeles county were made by women with disabilities. Becker at al (1997) in a study exploring the sexual and reproductive health of women with disabilities in the United States discovered that 18% of respondents had previously engaged in discussions about contraception with health professionals and family members.
The review showed that there is limited data available on contraceptive use by disabled women. Servais et al (2002) note how institutionalised women in Canada with an intellectual disability have their contraceptive choice dictated by the institution and are more likely to have an injectable form of contraception as opposed to the oral contraceptive pill. In their study of 397 Belgian women with intellectual disabilities, they found 41% of women did not use any method of contraception, 19% were using an oral contraceptive pill, while 1% were using an intrauterine device such as a coil. Almost half of the women with learning disabilities (seven women) in McCarthy's qualitative study (2002) had their contraceptive method chosen for them by their doctor. Disabled women may find the use of hormonal methods such as the pill or injectable contraception constrained due to the nature of their disability or may find barrier methods, i.e. the diaphragm or condoms, problematic due to the physical dexterity required for effective use (Morris, 1989; Kallianes & Rubenfeld, 1997). Nosek et al's research on disabled women's reproductive health found that 38% of the 475 disabled women surveyed had had children as opposed to 58% of the non-disabled women they reviewed (2001). In a study on reproductive and sexual health needs of disabled women, Veltman et al (2001) note that only 10% of respondents had discussed reproductive choices with health professionals.
Disabled women have frequently been denied the right to bear children through forced contraception and coercive sterilisation and through the lack of sexual and health education due to exclusionary practice in schools. They have also been denied the right to parent their children through loss of custody once the child is born. In the UK context, it is only recently that the sterilisation of disabled women requires legal consultation (Disability Awareness in Action, 1996). Data on the frequency of sterilisation among disabled women is sparse. Nosek et al (2001), in a large-scale comparative survey of the reproductive health of disabled (476) and non-disabled women (406) in the United States, found that 22% of disabled women had undergone a hysterectomy compared with 12% of non-disabled women. Servais et al (2002) in a study of 397 women with intellectual disabilities found that 23% of the women they studied had been sterilised.
Prilleltensky (2003) notes that in the United States there is an estimated 80% rate of abortion of foetuses diagnosed with a condition that could result in them having a significant disability. Conducting focus groups and interviews with 48 disabled mothers, Prilleltensky (2003) noted how one mother was encouraged to abort her foetus because health care professionals doubted her ability to care for a child as a single mother. Research by Westbrook & Chinnery (1995) in Australia comparing the childrearing experiences of mothers with and without disabilities found that over 20% of mothers with disabilities when pregnant were asked by their doctor to have an abortion compared to none of the non-disabled women being asked this.
In Prilleltensky's study the majority of the 48 disabled mothers found healthcare professionals misinformed and unable to deal with the dual factors of pregnancy and disability (2003). For many this meant that their disability was ignored at the expense of their pregnancy or vice-versa. She found that when it came to giving birth, disabled women's experience of maternity staff and doctors ranged from positive to negative. One woman noted how she had to convince maternity staff that the pains she was experiencing were labour pains and not a result of her physical impairment while another commended her doctor and his constant consultation with her at all stages of the birth. Mental health professionals in Nicholson et al's (1998) US study of mothering with mental illness noted that the fear of custody loss may deter pregnant women with mental health difficulties from seeking prenatal care.
For older disabled women, experiencing the menopause can be distressing due to a lack of information and lack of opportunity to discuss what is happening to their bodies (Welner, 1997; McCarthy, 2002). A Canadian study on key midlife health issues for women with disabilities found that many older women with disabilities experienced mental and emotional changes, changes in sexual intimacy and changes in their disability as a result of commencing the menopause (Morrow, 2002). Most health professionals rarely come into contact with disabled women seeking treatment for menopausal symptoms. Surveying 314 general practitioners in south east England, McCarthy noted that 60% of them had never treated a woman with learning disabilities for the menopause.
Disabled women need the same options as other women to choose to conceive or control their fertility. However they are faced with a plethora of barriers that include physical access barriers, socio-economic factors, communication barriers, lack of disability specific reproduction information and education, attitudinal barriers and medical control over their fertility. Physical barriers are multi-fold and include affordable wheelchair transportation, entrances and access to medical facilities and high physical examination tables (Fiduccia, 1997, Grabois, 2001, Welner 1999; Gill, 1994).
Waxman (1994) argues that disabled women's marginalised socio-economic status can lead to a denial of their reproductive and sexual rights. Welner (1999) states that the majority of disabled women are significantly more likely to be unemployed and underinsured, which represents another barrier to accessing reproductive health services. Kallianes & Rubenfeld (1997) state that large numbers of disabled women lack health insurance for basic care and have limited access to antenatal and infant care.
The inaccessibility of the built environment can also impact on disabled women's sexual health. D'Eath et al (2005) note how Irish women with physical disabilities cited inaccessible examination tables and equipment as hampering their access to breast and cervical cancer screening services. Mele et al (2005) looked at the sexual and reproductive health status of disabled women aged 21-65 in the United States and found that many of the women cited significant architectural and environmental factors (such as heavy doors, inaccessible doctors' surgeries) affecting their access to sexual health services.
Education and training, accessible clinics and adaptive examination equipment can all greatly assist women with disabilities in accessing and obtaining quality reproductive health care. Wong (2000) highlights good practice examples in community-based organisations in the US such as BHAWD (Breast Health Access for Women with Disabilities). These organisations are of the utmost importance in providing women with disabilities with much-needed access to sexual and reproductive health information as well as representing an underserved population in need of recognition and resources.
Accessible clinics in the US with adaptable examination instruments can also facilitate reproductive and sexual health screening for women with disabilities. Examination tables that lower to wheelchair level and have safety rails can encourage and facilitate regular health screening by women with physical disabilities, yet their existence is limited to a few specialised surgeries and hospitals, making access to such a service difficult for disabled women. Cervical cancer screening services in Victoria, Australia have developed a website (www.papscreen.org ) where disabled women seeking smear tests can search a database of sexual health service providers for clinics that are wheelchair accessible.
Kippax (2000) argues that good practice guides should be adopted in all sexual health and maternity services for women with learning disabilities. The National Health Service in the UK have developed a 'Good Practice Guide in Breast and Cervical Cancer Screening for Women with Learning Disabilities' which is part of the National Cancer Screening Programme and developed for use by practitioners who provide health screening for women with learning disabilities. The main areas highlighted for good practice are: ensuring women with disabilities have access to information to enable them to make their own decisions about whether or not to attend for breast screening or cervical screening; ensuring women with disabilities know what to expect when they attend for screening; and ensuring that they understand the possible consequences of screening and the need to be aware of changes in their own bodies.
D'Eath et al (2005), the National Women's Council of Ireland (NWCI) (2005b) and the Disability Federation of Ireland (2005) all argue for the targeting of and inclusion of women with disabilities in national breast and cervical cancer screening programmes in Ireland. Research has highlighted areas where there could be an improvement in current reproductive service provision for women with disabilities. The National Women's Council of Ireland (2002) have highlighted the need for improving access to reproductive and sexual health services for women with disabilities in Ireland as well as the need for disability awareness training among health professionals. The importance of raising awareness among health professionals of the specific needs of women with disabilities was highlighted by the disabled women in Yoshida et al's study (1999). Gillespie-Sells et al (1998) argue that sexual health education should be provided at every opportunity for disabled women and should not just focus on reproduction but on sexual health and relationships. Walsh et al (2001) note that educating disabled women about the signs and symptoms of STDs is crucial in achieving early treatment and to avoid transmission of, or the development of, late-stage STD complications.
From a consultation point of view, Welner (1997; 1999) advocates that good practice should mean that health care providers involve women with disabilities in all aspects of the health examination from inquiring about how a woman's disability affects her health to how best to mobilise her and retain her comfort during a physical examination, so the consultation is of maximum benefit for both patient and doctor.
McCarthy (1999) argues that information should be provided to disabled women in a sensitive and comprehensible fashion. She notes how one woman in her 1999 study on sexuality and women with learning disabilities had been given an information leaflet by her doctor on contraception which was 'full of densely typed medical information, way beyond her reading comprehension level' (1999:196). Women with Disabilities Australia (2004) advocate the provision of ante-natal and post-natal information in accessible formats (print, Braille, audiotape) and accessible locations for women with disabilities who may be isolated. In Ireland the Health Promotion Unit (2003) has published good practice guidelines on how to effectively write and translate health information, paying particular consideration to accessibility and literacy proofing for specific target audiences.
Motherhood is often viewed as an essential part of womanhood and its attainment confirms a social normativeness often denied to disabled women. Disabled women have traditionally been subject to the sceptical beliefs of family members, health practitioners and even complete strangers regarding their ability to be good mothers and care for their children (Prilleltensky, 2003). Barriers have been reported by disabled women who have attempted to adopt a child (White & White, 1994), obtain custody following a divorce or separation (Campbell, 1997) or even take their infant home from hospital after the birth (Kocher, 1994). The socially constructed ideal of the 'perfect mother' looking after her dependent children often excludes the reality of a disabled mother, who may rely on others to help her in looking after her children. Yoshida et al (1999) state that myths and stereotypes regarding gender and disability have impacted on women's choice to have children. Thomas (1997) argues that the feeling of being under society's judgemental magnifying glass, where one must ensure her mothering 'measures up' to the ideal, may deter many disabled women from having children at all or from asking for support and services that would facilitate their mothering. Nosek et al. (2001) in a national study of 504 women with physical disabilities and 442 women without physical disabilities in the United States found that 38% of disabled women had borne children compared to 51% of women without disabilities (2001:8).
In relation to social welfare issues, the lack of individualised payments to mothers with disabilities has been identified as a concern in the Irish context. Disabled mothers who are married to a non-disabled spouse may have their benefits reduced or even taken away because in marriage a spouse's resources are added to their disabled partners. The National Women's Council of Ireland's (2003) report on social welfare reform for women in Ireland argues for a model that promotes the economic independence of women within the social welfare code which enables individual rights to social welfare. The National Women's Council of Ireland (2003) makes the case for individual direct payments in a married woman's own right rather than as a dependent of her spouse.
Disablist attitudes, according to Thomas (1997), are the real culprits in encouraging feelings of vulnerability and insecurity among disabled mothers, rather than concerns over carrying out certain physical tasks. However, research suggests that being a successful mother and running a successful home are firmly fixed aspirations for disabled women despite societal prejudice (Morris,1995; Thomas, 1997; Farber; 1999; McKeever, 2003). Horgan (2004) notes that being a disabled mother allows you to bring up your children with a 'more tolerant, holistic view of the world' (2004: 203).
According to Fiduccia (2000), sexual and reproductive rights are only awarded to those who can deliver quality offspring and are physically and emotionally equipped as carers for their children. The right to be recognised as a mother is often denied to disabled women. Reports are rife of incidences in the United States where disabled mothers have had their children removed from their custody because a divorce court/maternity ward/neighbour deems them unfit to be a parent (Fiduccia, 1994). This has been found to be especially true for women with mental illness in the United States where the rate of custody loss is extremely high (Mowbray et al, 1995; Miller & Finnerty, 1996). Nicholson et al (1998), in a qualitative study of 42 mothers with mental illness and mental health professionals in the United States, found that fear of losing custody of their children was a main concern for the mothers in their study and that this concern deterred them from seeking help with parenting skills. McKeever et al (2003) argue that the right to be a mother is something disabled women have to 'claim' or 'prove', unlike non-disabled women. Many disabled mothers are fearful of health care professionals including social workers because they fear being deemed incapable as a parent, and are thus not aware of their rights. Gillespie-Sells et al (1998) note that disabled mothers are under constant pressure not to reproduce their disability and can be made feel selfish if they have a disabled baby. Sands (1995), in a comparative qualitative study of 20 single mothers with and without mental illness in the United States, found that mothers with mental illness felt a greater need to 'prove' themselves as mothers in society and develop 'normal' lives for themselves and their children.
Prilleltensky (2003) argues that narrow societal conceptions of care, where the caring role is equated with the caring function, have contributed significantly to the barriers faced by disabled mothers. Disabled mothers who are unable to independently fulfil all of the physical tasks of child rearing are often subjected to scepticism regarding their ability to be mothers. Also, given the commonly made association between mothering and physical care-giving on the one hand, and disability and dependency on the other, disabled women's role as caregivers, providers of emotional support and nurturers of children is often ignored (Campion, 1995; Hermes, 2004).
Nicholson et al (1998) note that the mothers with mental illness in their study often felt under pressure to accomplish all the routine tasks of parenting as well as managing their illness and that not to do so was seen as failing in their maternal role. In struggling to meet the 'dual challenge', Nicholson et al (1998) argue that mothers with mental illness may lose sight of the typical problems that parents have and may evaluate themselves against unrealistic standards.
Mc Keever et al (2003) carried out a qualitative study of 11 disabled mothers in Canada where issues emerged surrounding personal assistance. Availing of personal and homemaking service personnel, many of the mothers found that their assistant 'overlooked' help with their mothering role, neglecting to help them with duties such as housekeeping, cleaning of children's rooms, laundry and grocery shopping. This lack of assistance provision caused many of the mothers to 'map out' and plan activities such as doing the laundry as opposed to just doing them on the spot. In many instances, disabled mothers were forced to 'cajole' personal assistants into providing service that would benefit the entire family (McKeever et al, 2003). Assistance with mothering is generally not funded by government agencies and mothering help provided by the disabled mother's own personal assistant is discretionary and oftentimes refused.
Segregation of space and inaccessibility affecting disabled mothers can be seen as the antithesis to maternal bonding and closeness. In McKeever et al's study the majority of disabled mothers felt that their mothering was 'hampered' by the inaccessibility of the built environment. One mother in her study notes how she was unable to accompany her child to his friend's home because it was inaccessible. The majority of disabled mothers in the BIFOS (2003) study (120 participants) also found difficulties in mothering when they went outside the home. Many of the mothers reported a lack of appropriately accessible facilities and services for disabled mothers and their children. Ensuring pathways within the home are kept free of barriers e.g. toys strewn on the floor, was also a concern for the mothers in McKeever et al's (2003) study as it can impact on mother and child safety.
Many disabled mothers are unable to independently carry out domestic tasks because of physical impairments. Research indicates that there is a clear lack of available commercial adaptive aids to mothering which in turn influences the amount of time, planning and labour required by disabled mothers. Disabled mothers are forced to 'map out' how they will perform certain tasks in the home as opposed to automatically doing them. Activities such as carrying a baby or pushing a stroller while simultaneously operating a wheelchair are near impossible. McKeever et al (2003) noted that the majority of disabled mothers in their study paid privately for their structural and home alterations or had relatives who modified existing furniture such as infant cribs for them. The majority of mothers in Prilleltensky's (2003) study experimented with different methods of caring for their infant such as lifting their child by their clothes, yet expressed frustration at their inability to independently care constantly for their infant. Kennedy (2004) in a small qualitative Irish study with five disabled mothers and five mothers of disabled children also found disabled mothers to be adaptive in their mothering, for example breastfeeding their babies as it was more convenient than sterilizing and making up a bottle. Sixty per cent of the disabled mothers in the BIFOS (2003) study used adaptive equipment to parent their children, the equipment being adapted and/or financed by the mothers themselves or their families.
There is a sensitive and dynamic interplay between formal and informal support systems for mothers with disabilities. A greater shouldering of physical tasks by a non-disabled partner or wider support network results in more options for disabled mothers. Prilleltensky (2003) argues that there is a tension between the attitudes of families and their provision of informal family support at the micro level and formal existing supportive resources at the macro level. She argues that members of a disabled woman's family may be reluctant to respond to requests for assistance, not least because of attitudinal barriers, but also due to a lack of knowledge surrounding the limited availability and need for external resources such as home help or funding for adaptable aids to mothering.
As direct help with mothering is not publicly funded for disabled women in countries such as Canada, the United States, Britain and Ireland, or covered under the personal assistance scheme, many women with disabilities are forced to rely on help from their partner, children and extended family. McKeever et al's (2003) study on disabled mothers found the majority of mothers were reluctant to ask their children for assistance as often their children were willing but 'reluctantly helpful' (2003:191). Asking her child for help can impact considerably on a mother's view of her role. Many of the disabled mothers in McKeever et al's research experienced guilt at accepting care from their children as they viewed their role as 'mother' as one of giving care to their children, and not the other way round (2003). The majority of disabled mothers in Prilleltensky's (2003) study shared parenting with their partner and were assisted also by their wider family network. Partners' efforts to help with parenting were seen as positive by the majority of the 48 women participants in the research. However, many of the women had negative experiences of familial assistance with parenting especially when calls for assistance were overlooked by members of the wider family network. Eighty-three per cent of disabled mothers in the BIFOS (2003) study were assisted by their partners in parenting while 66% were assisted by relatives. The majority of the single mothers in the study had personal assistants to help them with their mothering responsibilities. Avison argues that single mothers with a disability in the US are extremely vulnerable to poverty, isolation and exclusion from familial and state support. In particular, single mothers with a mental illness are often isolated from community, family and government support and have greater exposure to financial strain and the stresses of care-giving than mothers without a mental illness (1997).
Much of the literature suggests a lack of knowledge and a lack of appropriate support amongst health care professionals and disabled women's wider support network as a major barrier to motherhood. Prilleltensky (2003) notes that many disabled women saw midwives in hospitals as generally supportive but lacking in information on how disability would affect pregnancy and motherhood.
Kennedy (2002) argues that problems with motherhood for disabled women in Ireland are not limited to the medical aspects of reproduction but include access to resources, familial support and physical barriers. There is a clear lack of state funding for parenting support for people with disabilities in Ireland. Advice and support on parenting is offered by non-governmental organisations such as the Disability Federation of Ireland and Enable Ireland but is under-resourced and informal with an absence of specific parenting support training programmes. Wates (1999) argues that in the UK disabled parenthood is extremely under-resourced, lacking in moral support and faced with many barriers including funding and direct access to support services. Prilleltensky (2003) found significant barriers to motherhood in the Canadian context, such as limited access to funded assistance in caring for children and the failure of the healthcare system to deal with the dual factors of pregnancy and disability in preparing disabled women for motherhood.
The provision of information to disabled mothers is vital. Mothers in Nicholson et al's (1998) study on mothers with mental illness noted the importance of having appropriate information to help them deal with the complexities of their illness and in turn explain these complexities to their children, family and peers.
Welner (1997) and Gillespie-Sells (1998) argue that a lack of familial support and education are significant barriers to pregnancy and motherhood for disabled women. Such lack of support stems from a lack of knowledge surrounding disability, sexuality, pregnancy and motherhood on the part of society as a whole and among those that interact with disabled women such as health care professionals and family and peer groups. However, Horgan (2004) argues that the main barrier is not the informal help and support given by family and peers but a lack of resources and controlled access to what limited resources do exist. Coupled with this lack of support and resources is a fear of asking for help, of being seen as unable to cope, which is a barrier in itself.
Mothering is challenging for any woman but for disabled women issues such as physical barriers and negative attitudes towards their childbearing and childrearing can make it even more problematic. Resources such as personal assistance for disabled mothers, supported accommodation for pregnant/lone mothers with disabilities, financial assistance for adaptive equipment and the provision of information on mothering resources (and how to access them) can benefit parenting for women with disabilities.
The presence of special needs advisors in maternity wards of some of the UK's hospitals has helped identify disabled women's needs from their own perspective and helped to assess any possible restrictions facing pregnant women with disabilities (such as high examination tables and hospital beds, additional requirements during birth and assistance nursing their newborn) and also the impact these will have on their lifestyle and coping strategies (Brown, 2000). The Maternity Alliance in the UK have also developed a range of publications suggesting workable improvements relating to the care of disabled women during pregnancy and after the birth which are available for both disabled mothers and health professionals. In Ireland, the Health Service Executive (HSE) provides a Counselling Nurse for People with Disabilities service that offers disabled mothers support and home visits, referral to other agencies and organisation of home support services.
Waxman Fidducia (2000) sees the existence of the MedicAid Community Attendance Service in the United States as a positive support for disabled mothers due to its provision of assistance to disabled people on a community basis regardless of their age or disability. McKeever et al (2003) note how structural alterations and adaptive tools for mothering as well as the provision of personal assistance can aid disabled mothers significantly. However, they are very often privately funded. The Research Institute for Consumer Affairs (Ricability) in the UK (2005) has developed a buying guide for assistive childcare products for mothers with a disability. Prilleltensky (2003) notes how many disabled mothers were facilitated in mothering by their personal assistants yet the level of help depended on how amenable their particular assistant was.
In Canada, a fledgling service called Nurturing Assistance provides care for physically disabled parents with young children, helping to strengthen the parent-child bond by providing assistance with bathing, changing, nursing and cuddling (Masuda, 1998). This service is not part of the publicly funded home-care system and is available only in certain circumstances. Recent research into the Nurturing Assistance programme showed that the funding and application process was cumbersome, and that eligibility requirements discriminated against disabled mothers who were under 16 or who already had assistance with daily living (Centre for Independent Living Toronto, 2001). The Canadian government also provide financial assistance, which is means-tested, to disabled women to build accessible housing. The Hadley School for the Blind in the United States offers courses on parenting with a disability for parents, people who are considering becoming parents and childcare workers.
Although current assistive service provision for mothers with disabilities is adequate, research in Europe (Hermes, 2004; BIFOS, 2003), the UK (Wates, 1999; Gillespie-Sells, 1998; Brown, 2000; Ricability, 2005) and Canada (Prilleltensky, 2003; McKeever et al., 2003) has highlighted areas where there could be improvement. The need to involve disabled women at the planning stages of programme and services development has been highlighted. Nicholson et al (1998) argue for the consideration of disabled women's roles as mothers when planning and delivering mental health management strategies. Avison (1997) recommends the development of community-based support initiatives for single mothers with mental illness to reduce their exposure to stress and isolation. The English National Board for Nursing (1996) and the Royal College of Midwives (2000) have advocated for maternity services liaising with disabled women and involving them in the planning of services. Only then, Brown and Gill (2000) argue, will we truly respond to and fulfil the needs of pregnant disabled women and disabled mothers rather than responding to our perceptions of their needs.
In the UK, Ramsay et al (2001) advocate for the introduction of accessible emergency and long-term supported accommodation for pregnant/lone mothers with mental illness who are vulnerable to poverty and exclusion. The National Women's Council Of Ireland (2005a) argue that the rehabilitation needs of Irish women with mental illness have been neglected and that health and social service provision needs to expand to include housing for mothers with mental illness. Welner (1997) recommends supportive education, sensitivity on the part of health professionals and supportive family and peer networks as vital ingredients in helping disabled women to embrace motherhood.
There is a paucity of research and published work on disabled women's sexuality, reproductive freedoms and disabled motherhood in Ireland. International literature has tended to focus more on the medical aspects to the neglect of the psycho-social aspects of disabled women's sexual and reproductive lives, although this situation has begun to change, particularly over the past 10 years. While there is an awareness of the functional and medical aspects of family planning for disabled women, there is very little information on the number of women with disabilities in Ireland seeking family planning advice and their experiences of using birth control. Sub-populations of disabled women such as ethnic minorities and lesbians are clearly absent from consideration in national and international research on disabled women's sexual and reproductive lives. A report by the Scottish Executive (2003) found that the intersection between disability and sexual orientation was largely absent in disability-related research.
In the Irish context, there is a lack of appropriate sex education for disabled girls in the home and school environments. Meanwhile, health care practitioners are not providing for the sexual and reproductive health needs of disabled women in appropriate ways. There is a clear absence of financial and emotional support for parenting programmes for mothers with disabilities. The Disabled Persons Grant ( Housing Adaptations & Extensions) is a discretionary fund and women with disabilities who do not qualify for the fund are forced to personally finance modifications to their home. Mothering assistance does not fall under the Personal Assistance Scheme, leaving many mothers with disabilities to rely on informal parenting advice and support.
It is of critical importance that girls and women with disabilities in Ireland develop understandings of their sexuality and womanhood. In so doing they will develop knowledge and self-esteem to be able to express themselves sexually, protect their sexual health, and make informed choices about pregnancy and motherhood. Entailed in ensuring disabled women's psychosocial well-being is the provision of appropriate sex education, comprehensive reproductive health care and increased funding for parenting supports for disabled women.
The following key empirical related research emerged from the review on sexuality, reproductive freedoms and motherhood:
The following policy related issues arose in relation to the findings on sexuality, reproduction and motherhood for disabled women:
The following areas for further research in the Irish context emerged from the review: