Research about disabled adults has tended to focus on the employment role as holding the promise for full integration. Moreover, when the discourse has addressed familial roles such as parenting, the extant literature has been grounded in a medical model of disability and highlights the perceived incompetence of disabled parents and their parenting practices.
This article presents an overview of research about people with disabilities in their parenting role. It then addresses the cultural meaning of parenthood within the unique socio-political context that exists in Israel and reports on the major findings of a qualitative study that explored the parenting experiences of people with vision impairment.
Important themes that resonated throughout the study interviews include the discriminatory attitudes and practices that these parents faced while navigating the parenting role as well as issues of independence and autonomy. These findings are discussed against a socio-political backdrop of disability that characterizes contemporary Israeli society.
Keywords: parenting, supported parenting, adult disability, vision impairment, Israel
Introduction
In both majority and minority world contexts, different stages of the life course may be identified through the fulfillment of recognized social roles. In Western culture, parenthood is viewed as being a significant marker of adult social status (Priestley, 2003). Yet, voices from within the disability community claim that the existence of discriminatory practices in the environment stand as obstacles to the satisfying fulfillment of the parenting role for people with disabilities (Olkin, 1999; Priestley, 2003).
This article first presents an overview of research in the area of parenting among people with disabilities and then addresses the cultural meaning of parenthood within the unique socio-political context that exists in Israel. It then reports on the main findings of an empirical study that explores the parenting experiences of people with vision impairment and discusses its implications for the improvement of supports for these parents.
The socio-political background that colors the lives of people with disabilities in Israel is similar to that of other Western countries. However, while in the United States the disability rights movement has played an important role in fighting discrimination and attempting to empower people with disabilities at both the individual and societal levels for more than three decades, in Israel the disability movement has been slower to gain momentum. Until recently, the disability movement has been fragmented with individual disability groups laying claims to differential benefits and services (Rimmerman & Herr, 2004). Only since the late 1990s, with the introduction of legislation that conferred equality for people with disabilities (Equal Rights for People with Disabilities Law, 1998), and following the success of a long and high-profile strike in 1999, has the Israeli disability movement adopted the struggle for civil rights for people with disabilities. With these events, Israeli society has started to fight against discrimination and is working towards promoting equal physical and social accessibility for all people with disabilities in all areas of their lives.
Together with the implementation of the Equal Rights for People with Disabilities Law (1998), there is increasing recognition in Israel, that the successful integration of people with disabilities into community life can be facilitated or hindered by attitudes of the public (Vilchinsky & Findler, 2004). A survey carried out in 2005 by the Commission for Equal Rights of People with Disabilities on attitudes of the Israeli public to people with disabilities along a range of daily activities revealed that almost half of the respondents believed that people with disabilities cannot raise a family as well as people without a disability (Commission for Equal Rights for People with Disabilities, 2005). This response appears to highlight the attitudinal barriers that may still exist for many parents (or potential parents) with disabilities in Israel today.
Disabled parents
Limited research has been conducted on the parenting experiences of people with disabilities both in the United States and Europe. While some of the earlier writings describe parents' experiences (e.g., Dicaprio, 1971) and family dynamics (Deshen and Deshen, 1989; Gill-Williamson, 1991) a much larger portion of the literature published during that era is grounded in a medical model of disability that highlights the perceived incompetence of these parents and their parenting practices. It is replete with pathologizing assumptions whereby the children are viewed as victims and at risk for maladjustment (Olkin, 1999; see also Buck and Hohmann, 1983; Thurman, 1985). As Olsen (1996) points out, "Research in the area of parents with disabilities has tended to involve the search for the negative impact of an adult's disability on a child's growth, intelligence and adjustment" (p. 41). An area that is often cited as problematic for these children is that of the 'parentification' of the child. There is a general assumption that parents with disabilities are "dependent and selfish in their needs for assistance from their children" (Olsen 1996, p.47), despite recent indications to the contrary (Cohen, 1998). Furthermore, this tendency "…is not merely a problem in past literature but quite current" (Kirshbaum and Olkin, 2002 p.67).
Over the last decade, on both sides of the Atlantic, a growing number of empirical studies have been conducted within a disability research framework that highlight many important areas of difficulties for parents with disabilities (Olsen, 1996; Toms Barker & Maralani, 1997; Olsen & Clarke, 2003). One such study was commissioned by Through the Looking Glass, a non-profit agency, which was founded in 1982 to bring a disability culture perspective to interventions with families with disabilities in the United States. The findings, based on data from a large national sample of parents with disabilities, revealed several important areas of difficulties that include: inadequate transportation, lack of accessible housing, limited adaptive parenting equipment, and difficulties associated with pregnancy or childbirth.
In addition, published narratives and qualitative methodologies provide important insights into the day-to-day experiences of these parents (Wates, 1997; Sherer Jacobson, 1999; Wates & Jade, 1999). In particular, authors have addressed issues such as mothering with specific impairments, for example vision impairment and physical disabilities (Conley-Jung, 1996; Wates, 1997); reproductive experiences of disabled women (Haseltine, Cole & Gray, 1997; Thomas and Curtis, 1997; O'Toole, 2002); and women's experiences of being 'good enough mothers' (Kent, 2002; Kocher, 1994, Grue and Laerum, 2002). It is interesting to note that most of these writings focus on motherhood and the mothering role as is also found in the general literature on parenting, and the fathering experience is all but overlooked. Yet, overall, these narratives suggest that, together with the many daily challenges that they face, these parents enjoy their children and feel confident in their role as parents.
Research on parenting
An overview of the literature in the general population highlights the enormous responsibility that parents have for their children's physical and psychosocial growth. This responsibility includes ensuring their safety in the physical environment as well as fostering their emotional and cognitive development throughout their early years. These responsibilities are located in the parenting roles of socialization and childcare, whereby the role of socialization is related to the social and psychological development of the child, and child care refers to the physical and psychological maintenance of the child (Gecas, 1976). This literature identifies parenting trajectories that vary according to the developmental stage of the child and emphasize the different socialization and childcare components of the parenting role.
A large part of the existing literature is conducted within a unidirectional framework that focuses on how parents, through their attributes, attitudes and behaviors, influence the development of the child (Jaffe, 1997). More recently, researchers are recognizing the influence of the child on the development of parenting practices. However, both these approaches view the parent-child system in terms of how it impacts the growth and development of the child (Ryff & Seltzer, 1996), with a focus on the outcome, namely, the healthy development of the child. Relatively little interest has emerged on the effects of the parenting role on the adult's continued development and well-being (Ryff & Seltzer, 1996) and there is little recognition of the parenting role as a potential area of personal growth for adults resulting in a paucity of empirical research in this area. One notable exception is that of Umberson (1989) who suggests that parenthood does contribute to a sense of meaningfulness: children may symbolize a psychological asset whereby parents may expect to receive inherent gratification or satisfaction. Furthermore, together with the changing roles of men and women in modern society, the value of the parenting role has been affirmed as an important social investment and a potential source of instrumental and emotional support in old age (Schoen, Nathanson, Fields, & Astone, 1997). On the other hand, together with the rewards of parenting, some of the changes in the social environment, such as the rise in divorce and single parenting (Glick, 1984) are also associated with bringing unique stresses and strains to the parent-child relationship, and consequently to the parents' sense of well-being.
Thus, the family is recognized as a social structure that has the capacity to promote or hinder the well-being of its individual adult members. While some research has demonstrated that children at home may decrease adult well-being in the general population (McLanahan & Addams, 1989), Ross, Mirowsky and Goldsteen (1990) suggest that under certain conditions children may in fact improve adult well-being. They suggest these conditions are "(a) enough family income so that there are no felt economic hardships, (b) the mother's paid employment, (c) available and affordable child care services, and (d) support from husbands, or other relatives in the household, in the shape of emotional support and shared participation in child care" (p.1068). Furthermore, the burdens of the parenting role may be offset by the development of both increased institutional support for parents (Bird, 1997), and the strengthening of their social networks (Dunst, Trivette & Deal, 1994).
The above overview provides a backdrop through which we can start to understand the meaning of the parenting role in today's society as well as identify the structural and social supports needed for its satisfying fulfillment.
However, the study presented below was conducted in Israel and it seems important to briefly consider whether this overview also relates to Israeli culture and Israeli adults in the parenting role. Is the Israeli family structure similar to that in other Western countries and how do Israelis perceive the parenting role?
The family and parenting in Israel
The massive waves of immigration that have taken place throughout Israel's history have resulted in a wide diversity of family lifestyles. Within this diversity, changes in marriage, family and divorce trends in Israel appear similar to those of other Western countries, such as the rise in divorce rates. In addition, research that has been conducted on stress and coping in families around issues, such as single parenting and working mothers, indicates that Israeli families' response to such stressors are not so different from other families in the Western world (Cohen & Savaya, 2000; Segel-Engelchin & Wozner, 2005).
A look at Israeli society reveals that it is very family-oriented and strongly pronatalist, at both institutional and normative/individual levels (Remennick, 2000). As Susan Kahn (2000) claims:
For Israeli Jews the imperative to reproduce has deep political and historical roots. Some feel they must have children to counterbalance what they believe to be a demographic threat … Others believe they must produce soldiers to defend the fledgling state. Some feel pressure to have children in order to replace the six million Jews killed in the holocaust. Many … simply have traditional notions of family life that are very child-centered. ( p.3)
A reflection of this positive evaluation of parenthood may be seen through the burgeoning medical practice of new reproductive technologies in Israel. Studies have shown that Israelis are exceptionally supportive of these technologies, and Israel seems to have embraced the practice of prenatal diagnosis and premarital genetic testing to a far greater extent than the majority of medically advanced countries (Hashiloni-Dolev, 2006).
In their review of the Jewish family in Israel, Lavee and Katz (2003) comment that "…children are highly valued not only by their parents… but also by society as a whole. The welfare of children is considered a collective responsibility" (p. 203). Within this pronatalist atmosphere, there exists a socio-cultural set of norms that impinge on emotional function, behavior and rules that dictate how the parenting role should be fulfilled (Haelyon, 2006). Furthermore, these values are reflected in family-related government policies, such as child benefits, that encourage and support the assumption of the parenting role in the Jewish population. Consequently, an important question is whether these values extend to supporting the parenting role for people with disabilities.
Disability research
Empirical research 'on' people with disabilities has been, for the most part, historically conducted within a framework that conceptualizes disability as an individual and personal tragedy, determined by a person's functional limitations. This medical/individual disability paradigm has generated positivist or interpretative methodologies and has contributed to the continued marginalization and oppression of people with disabilities (Stone & Priestley, 2001). However, since the 1970s, a new disability paradigm has emerged that identifies disability as a social and cultural construction and recognizes people with disabilities as an oppressed minority group.
This new paradigm has generated new discourses regarding disability research and, in both the United States and Europe, researchers are increasingly adopting participatory/emancipatory research frameworks in an effort to contribute to the lives of people with disabilities.
However, while academics in the field of disability in Israel are increasingly recognizing the significance of family life for people with disabilities (see Gilad 2007), the field of disability research is still largely dominated by studies grounded in oppressive methodologies. The role of participatory and emancipatory research frameworks are only starting to find their place on disability research agendas in Israel.
In light of the literature reviewed above and the paucity of empirical research carried out within a socio-political model of disability in Israel, particularly with regard to familial and social roles, it is important to explore the experiences of this little examined population of parents, namely parents with disabilities. The study described below contributes to the preliminary identification of those social and physical barriers that may challenge the parenting experiences of parents with disabilities in Israel and addresses those conditions that will enhance their overall personal and social well-being and that of their families.
Method
The following description draws on a larger study that focused on the intersection of parenting and vision impairment (Gutman, 2005) and whose objective was to explore how parents with vision impairment experience their parenting role. The research paradigm that directed the study design was grounded in the core principles of disability research as proposed by Stone and Priestley (1996) within an empowering and emancipatory research agenda. A semi-structured interview instrument was used, including a demographic questionnaire and open questions that explored the parents' experiences with transportation, the attitudes of other people and consideration of services that are provided to assist them in their parenting role
Seventy parents with vision impairment were recruited through purposive and snowball sampling procedures, employing media appeals and key informant sources throughout Israel. Criteria for inclusion in the study were: parents with dependent children, who self reported on reduced functioning in their daily activities as a result of visual impairment for a period of at least two years. The study was conducted through in-depth telephone interviews.
The interviews were transcribed and analyzed according to a modified method of qualitative content analysis method (Miles & Huberman, 1994) in order to elicit meanings and insight from the text and identify major themes.
Demographics
The sample of parents was almost equally divided according to gender (48.6% females and 51.4% males) and was mature, with a mean age of 42.9 with a range of 26 to 59 years. Nearly a third of the participants (n=22) had partners with a disability, most off whom (n=17) had a vision impairment. Almost half the participants were employed, either full or part-time, outside the home at the time of the interview. The largest number of parents had between one and three children (with a mean of 2.6 children). More than a third of the families subsisted on less than 6,000 shekels a month. In 2004, the average household income in Israel for a family with two children stood at 11,273 NIS (Central Bureau of Statistics, 2006) and the poverty line — 50% of the median income — stood at NIS 4,463 a month (National Insurance Institute, 2002) for the same household configuration.
Limitations of the study design
While recognizing that parents face different physical tasks, responsibilities, resources and rewards according to the developmental stage of the child, the present study addresses the experiences of parents of dependent children across the age spectrum. Although the majority of parents addressed the physical aspects of child rearing with their young children, either in the present or retrospectively, the interviews also allowed for parents of older children to relate to their unique experiences with their teenage children.
A major limitation of the study design lies in the use of purposive and snowball sampling techniques and the consequent motivation of the key informant sources to access potential participants. These sampling techniques bring into question the degree that the sample is representative of the population and the resulting generalization of the findings of this study to the overall population of parents with vision impairment in Israel.
An additional limitation to this study may be that those parents who agreed to participate in the study may differ in important respects from those who did not, which raises the possibility of self selection. One example is that nearly half of the participants were employed outside the home which stands in stark contrast to the 28% of employed work-age adults who are registered as visually impaired in Israel (Smith & Smith, 1996). Finally, it important to consider that interview responses may have been skewed by the parents' desire to present themselves as good and loving parents, a bias which is common in qualitative interviews in general .
Findings
The following narrative describes the major themes that emerged from the data.
Experiences with transportation
Two-thirds of the parents interviewed described their experiences in this area (n=47). Parents reported that they used different modes of transportation depending on the age of the children, with some using taxis because it was "just easier than going by bus with the children, despite the added expense." The train service is not used extensively in Israel. Some (n=11) described the complications and stress related to traveling with an infant and how they had avoided traveling on buses alone with young children.
The parents also raised issues related to the reactions of bus and taxi drivers and of other passengers. Bus and taxi drivers were often unhelpful and displayed impatience. One frustrated father told of his experiences during winter months — the bus driver often stopped next to puddles and because he was unable to see them he often got soaked together with his children.
Experiences of other people's attitudes
Half of the parents (n=35) spoke of their experiences of discriminatory attitudes in relation to their parenting role. Many of them (n=29) expressed feeling hurt by comments made by sighted people that implied that they were helpless, needy or cognitively impaired. They described comments of sighted people that reflect their lack of knowledge of the effects of vision impairment, for example asking questions about how the parent bathes or dresses the infant. One parent commented that a sighted parent would not be asked this type of intrusive question.
Often, outsiders undermine the parent's status, for example by disciplining the children in front of the mother as though she was not there, or tying a child's shoelace without asking the parent. Other examples were poignantly described by four young mothers who, after giving birth, were ignored by health care staff who directed their comments only to their sighted attendants.
One mother painfully recalled the series of events around the birth of her first child two years previously. She had faced the quizzical comments from the community nurse at the baby clinic during her pregnancy and then the insensitive behavior of the nursing staff and social workers at the hospital following the birth: within half an hour of giving birth she was "interrogated" about her abilities to function as a mother. Moreover, she was not allowed to hold or feed the baby if she was alone in her room. The final humiliation for her came when she was not included in the general invitation to join the new mothers' group that was held in the ward for all the new mothers.
Fathers also related discriminatory experiences. For example, one described his custody meetings with social workers during divorce proceedings where, as a person with disabilities, he had to prove much more than a "regular" person that he was fit to have custody of his children. This father had gone on to fight for custody and had won.
On the other hand, some of the parents (n=6) described how people are amazed by how they manage in their parenting role. Sighted people are often impressed by how visually-impaired parents manage to execute household tasks, such as cooking or dressing the children. One mother commented, "…people are always impressed that my children are always tidy and clean." Even though responses of amazement may have been well-meaning, some parents did take offense. As one mother retorted, "Why shouldn't we manage?"
The most challenging aspects of being a parent
Participants were asked to elaborate on the most challenging aspects of being a parent with visual impairment. Their responses spanned different areas of functioning and included:
Indoor activities
Nearly two-thirds (n=43) of all the parents reported on the challenges related to education and leisure time activities, such as helping their children with their studies, checking their homework, and playing with them.
Outdoor activities and mobility issues
Various daily activities such as taking their children to the park or crossing the road with them proved to be formidable tasks for many of these parents (n=38) while the children were young. As one young mother described, "it's harder to walk in the street when they are little … the child wants to walk fast and you walk slowly because you're blind … when he was little he would pull me along…" Mobility limitations also reduced their ability to be spontaneous and limited their degree of initiating and participating in activities with their children.
Psychosocial issues
Psychological and/or social issues were raised as central challenges faced by more than a third of these parents (n=27). They talked about how their children are teased at school or stand out amongst the rest of the children with the label of being "those kids with the blind parents". According to some of the parents in this study (n=6), their children are embarrassed in public and even angry and impatient with their parents' behavior. As one of the mothers pointed out, "…children want their parents to be like other parents."
The parents are very aware of the emotional impact of their vision impairment on their children. One father talked of his child's embarrassment and described how his little girl did not always want him to take her to school or attend a parents' meeting. She would say "Daddy, I don't need you to come to the parents' meeting, it's not important for you to come…" When questioned, his daughter replied "… so they won't laugh at you…"
Other parents described how their children at different ages had tested them, for example by placing physical obstacles in their path to check if the parent is really blind, or by lying to them and exploiting the impairment to their benefit. They also viewed their functional limitations as undermining their ability to fully fulfill the parenting role, for example by not being as knowledgeable and up-to-date as other parents (about computers and current affairs), or not being able to carry out certain duties (for example driving their children around).
A few parents (n=3) addressed their ambivalent feelings around needing assistance while at the same time not wanting to burden their children. A young mother explained: people tell her son to help her by holding her hand or guiding her, "…but on the other hand, they say that the child has to cope with all sorts of problems because his parents can't see… and although he's very mature … this maturity may be a burden for him……"
Parents expressed their frustration that, unlike sighted parents, their lives are under a microscope. As one parent stated:
Everything is under pressure, the pressure that you're not sure whether you've cleaned properly, if there's a stain on the child's clothing, anything so that people don't ask me questions and …maybe it's neglect… I have to prove I can function perfectly.
Health and safety issues
More than a quarter of all the parents (n=18) spoke of their anxieties regarding the health and safety of their children. Several described the difficulties they faced when giving the child medication. One mother recollected that she could not see whether her sleeping infant was breathing "because I couldn't see her chest rise … so I would touch her". Other mothers talked of the need for a sighted person (either their spouse or another adult) to look at the child at least once daily, to ensure that there were no visible symptoms that they could not see.
Additional difficulties facing these parents included navigating the medical system. As the stay-at-home primary caregiver, one father recollected the hospitalization of his infant son and his inability to relieve the mother at the hospital, because of his unfamiliarity with this setting.
With regard to the safety of the children, several parents (n=7) described how they had to be physically close to their children in order to supervise them, "were they climbing on to a table? …touching an electric socket?" They talked about their strategies to ensure their children's safety such as closing doors in order to close off areas in the home, enabling them to supervise the child when they are alone.
Vision impairment affects many aspects of the parenting role. As one father summed up:…there is an effect of visual impairment ... It is in every area we relate to and it also includes …emotional things. I haven't found one field that has no … has no effect — whether homework or games or topics that we are both interested in…
Positive aspects of being a parent with vision impairment
Nearly two-thirds of all the parents (n=45) spoke of the rewards of being a parent with vision impairment. Some (n=18) identified unique aspects of the parent-child relationship, such as communication patterns: "You can't just look at the child's face when he comes home from school to see how the day went, you need to ask." Their children also quickly learned that they had to talk in order to be understood, and to express themselves clearly to avoid misunderstandings. For many parents, their young children's increased vocabulary skills became a source of pride.
Two mothers pointed to the "luxury" of their disability allowance that enabled them to be "stay-at-home moms." They explained that the children had really gained by having a mother at home, by being there with lunch when they came home from school and, as one mother explained, by always having "…her finger on the pulse." These parents felt more involved in their children's lives, even at the expense of being "over involved and somewhat of a nag!" Some working parents recognized that aside from their work they did spend a considerable amount of time at home which provided opportunities to be attentive to their children's needs, "possibly more so than sighted parents, who may be occupied with other activities in their free time." They talked about their increased patience and ability to give the children a lot of attention, which they admitted may, to some extent, be related to their need to compensate their children for their limited abilities in certain areas.
Some parents (n=17) pointed to the ways that their children acquired unique and important skills, such as demonstrating increased acceptance of people who are different. Two fathers suggested that their children learn to see the person with a disability as an active participant in society. One of them described how his six-year-old son had stood up in front of his class and explained what being blind is. "He talks to other children and these children tell their parents, so in effect he is taking part in passing on the message about disabilities to other people, it's like he's taking part in a mission." This father went on to emphasize that "a powerful message is also conveyed by parents who are vision impaired by demonstrating to other parents in the community that they function successfully in their parental role."
Several parents indicated that the child learns the value of helping others through taking on certain (limited) roles within the family setting. For example, children are often happy to take on helping roles such as choosing new clothes for the mother, or watching out for physical obstacles when out with the parents. As one parent said: "They learn to give help, which is an educational thing."
A number of parents (n=8) talked about being positive role models for their children, demonstrating to them on a daily basis that despite the difficulties, the parent manages. One father succinctly captured this idea when he told of "what we bequeath to our children … the issue of coping with life's turns … they learn to acquire the tools, so that irrespective of your problem, you can move forward…" Another mother suggested that the children "learn to see something that few people get to see …they learn that it is possible."
The last theme related to the parents' sense of self and self worth. A total of ten parents cited this positive aspect of parenting. Their narratives resonated with a sense of accomplishment in their ability to cope and succeed in the parenting role, despite their vision impairment. Even small tasks, such as telling stories or taking the children on outings, became symbols of their successes in their parenting role. Finally, parents also expressed the enormous pride they enjoyed through the successes of their children.
Changes in public services
Many parents (n=12), especially mothers, addressed the need for help at home, particularly with cleaning and managing the house when the children are small, thereby freeing up time to spend with their children. Other parents (n=14) were concerned about finding solutions to educational and enrichment issues.
Some mothers spoke of their need for child development courses or workshops that could provide important information and knowledge on parenting issues and suggested the development of "parenting classes" as well as a mentoring service that would enable young mothers to hook up with experienced mothers with vision impairment. Some parents (n=10) suggested developing parenting groups, despite differing views as to whether they should be professionally run or self-help groups. Yet, the consensus was clear as these parents described their sense of isolation in the parenting role — many of their issues could be addressed through participation in a group setting.
Accessibility to information was introduced as being an important focus for the development of services for these parents. Misunderstandings occur when teachers send out letters or notes without consideration of the parents' visual impairment. One father complained that notices for parents were posted on a notice board that he could not see and suggested that formal protocols be created to ensure all parents' access to information.
One mother asserted that "the issue of accessibility to information on parenting issues is a basic need for all parents." As she pointed out:
Parents generally, both passively and actively, use a variety of means to keep themselves informed on issues related to their parenting role…whether through the national press, billboard notices, community newsletters, or the local press. The information they acquire can relate to a range of issues …such as parenting practices, up-to-the-minute technological information …or the range of local activities that are available for different age groups.
Parents with vision impairment do not have access to these channels and this mother advocated for the use of audio means, such as cassettes, to disseminate information.
Many parents (n=29) addressed the need for changes associated with financial policies, including the provision of a broader range of financial resources through higher mobility allowances (In Israel, people with vision impairments receive special benefits for transit expenses), income supplements and assistance with daycare expenses, as well as consideration of appropriate public housing. Some parents (n=5) also mentioned the need for financial supplements that would be for the direct benefit of the children such as for computers or payment for private tutors.
The issue of dependence on outside help was fraught with a variety of emotions. Some parents were adamant that they did not want voluntary or public assistance in the form of services. Rather, they advocated for autonomy in choosing and supervising the people who helped them. These parents wanted to be in control and proposed allocation of monies for these services so that they could determine what and who they wanted to provide the service for their family. Other parents talked about their humiliation at having to apply for services and they advocated that "these services should be provided as a right or entitlement and not be based on the financial status of the local welfare authority and the discretion of a public service worker. As one mother stated, "I'd institutionalize all the help … really institutionalize it, so it's clear that a blind parent would get help … regardless of an income test … dependent only on his visual limitation."
Discussion
The concept of empowerment has become a slogan in the vocabulary of educators and clinical workers today. This construct embodies a process of change, one that occurs on the individual, interpersonal and political levels that intertwine to promote an individual's sense of personal power, ability to influence and ability to work with others to change social institutions (Gutierrez, 1994). This study, with its disability research components (Stone & Priestley, 1996), provided opportunities for the development of a sense of personal power: for example, many participants were surprised to hear the comprehensive informed consent, but felt respected and addressed as equals and related to the novelty of involvement in a study that informed them of their rights as participants. For many this was the first time that they had been apprised of their rights in such depth and reported their positive feelings about the interview process. So, for many of the participants, even the first stage of the study offered exposure to an empowering experience. Furthermore, the vast majority of parents who participated vocalized their desire to contribute to a process that could influence social policy and bring about social change.
Many parents also expressed their interest in receiving a copy of the findings and others talked about wanting to participate in raising public awareness through talking to professionals and in schools. The parents also discussed their need to be recognized as a group, and started to explore how their group voice could begin to be heard. At the conclusion of the study, 23 of the participants met with the author to discuss the findings and determine how they could develop a parenting organization that would promote their rights as parents. The author has subsequently learned that a nucleus of this group continues to meet and they are in the process of developing alliances with other disability groups to create a more powerful platform from which to address their parenting role.
One of the more unexpected comments emphasized by some of the parents in this study was about not needing help from other people. This theme contrasts with both the literature that supports the significance of social support for the wellbeing of families in general (Dunst, Trivette & Deal, 1994), and previous findings from Israel that suggest that Israeli parents believe that parenting is a social experience that involves others, like family and friends (Bornstein et al, 1998). This theme also stands in contrast to some of the parents' responses when they advocated for the institutionalization of support services.
These parents were keen to emphasize that they did not need social support systems such as families and friends to support them in their parenting role. As one mother voiced, "it's outrageous, people assume that I get a lot of help…. They think I am helpless and cannot cope by myself…."
Another mother said, "I'm like any other mother, I manage fine on my own… My mother came to help me in the beginning, like any new mom I needed help…but after that…why should I need anyone to help me?"
In this regard, reports from the United Kingdom on the issue of applying for services, suggest that disabled parents are often hesitant to ask for help to support them in their parenting role: they fear that they will be perceived as incompetent and unable to care for their children and that their children will be taken into care (Morris, 2003; Olsen & Tyers, 2004). Although this issue was not openly discussed by the parents in the present study, some comments emerged that related to constantly having to "prove" that the children were well cared for.
The study identified the parents' view that they should control the type and extent of assistance that they need to effectively carry out their parenting role. One such method of ensuring this control would be through a program of direct payments to the parents. This type of program of direct payments has been initiated in the United Kingdom in limited geographical areas (Olsen & Clarke, 2003). A policy of allocating monies directly to parents with disabilities so that they can make their own choices regarding the type and extent of the supports that they need in order to best carry out the parenting role is viewed there as a vital component in promoting their empowerment and strengthening their families. The findings in the present study suggest that the adoption of a similar program in Israel would also contribute to these parents' sense of competence and thereby increase their sense of well-being and satisfaction in the parenting role.
This feeling of having to prove their parenting skills may also be indicative of the existence of discriminating attitudes of service professionals against parents with disabilities. Many of the parents in this study identified the attitudes and behaviors of professionals such as doctors, nurses and social workers as conveying their reservations about the parents' abilities. Overt discrimination was also experienced by some of the parents, especially by women during their pregnancy and around the birth of their children. It therefore seems important to provide training programs and workshops for the range of professionals who are involved in the health and well-being of families to raise awareness and disseminate information regarding disability issues in general, and parenting with a disability in particular.
Furthermore, the issue of discrimination against parents with disabilities by public officials needs to be dealt with through policy and legislation. The Equal Rights Law for People with Disabilities (1998) charges the recently established Commission for Equal Rights for People with Disabilities to promote equality for, and prevent discrimination of, people with disabilities. Disabled parents in Israel need to know that they have the right to receive equal treatment in all their life roles, including that of being a parent.
Contrary to expectations, the parents' narratives in this study revealed few gender differences. However, almost twice as many mothers than fathers reported on their negative experiences with regard to other peoples' attitudes towards them in their parenting role. This finding may reflect empirical findings that suggest that women report negative emotions more often than men (Simon & Nath, 2004). Yet, it may be more accurate to relate this finding to those studies and narratives that identify the existence of discriminatory attitudes and practices towards disabled women in their life roles in general (Asch & Fine, 1988; Finger, 1990). Perhaps the mothers in this study experienced the negative reactions of those around them regarding their ability to successfully fulfil the mothering role as but one aspect of their continued oppression and discrimination as women with disabilities.
Most of the parents had much to say about their experiences as parents and from the outset were very enthusiastic about participating in the study and talked about their relationships with their children in very positive terms. One of the messages that emerged repeatedly during the interviews was that, despite the challenges that they faced, these parents viewed the parenting role as being a major source of meaning and satisfaction in their lives. They were very proud of their children's achievements, whether reflected in the child's maturity, sensitivity to difference, or acquisition of coping skills. Equally important, these parents expressed their sense of accomplishment that they gained in successfully carrying out many of the facets of the parenting role.
In talking about the positive aspects of the parenting experience, like all parents of dependent children both in Israel and elsewhere, the study participants also described the everyday stresses and strains that they experience in fulfilling the parenting role. Their "normative" narratives reflect how these Israeli families, as in other Western cultures and regardless of whether the parents have a disability or not, need both physical and social supports to buffer and improve the quality of their parenting experience and contribute to their personal and familial well-being.
This study contributes to the small but burgeoning knowledge base that is emerging from the United States and the United Kingdom on issues of parenting with disabilities. It also contributes to the hitherto limited pool of empirical work that has been conducted on the familial and social roles of people with disabilities in general, and with vision impairment in particular, especially in Israel.
The present study set out to provide preliminary data on the experiences of disabled parents in Israel. It was, therefore, exploratory in nature and did not employ any systematic examination of data according to demographic groups, such as age groups, degree of visual impairment and partner's disability status. Furthermore, in line with research grounded in a socio-political model of disability, this study aimed to identify and highlight the common experiences of parents with disabilities rather than their differences.
As noted by Oliver (1996), the social model of disability attempts to explain the social barriers of disability rather than the personal restrictions of impairment. The present study, although grounded in the social model of disability, focused on a single impairment, and examined the unique experiences of parents with vision impairment. In order to further knowledge about other groups of parents with disabilities, it would seem to be important to conduct future studies with parents with a variety of impairments. Finally, although the majority of the parents who participated in this study were the biological parent of their children (n=69), future research with disabled parents may need to look at the parenting experiences of people with disabilities as adoptive parents.
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