Empowerment and Internet

Despite legislation in Western societies that assert the reproductive rights of disabled people, many disabled people who want to become parents face prejudice from family members and friends (Asch and Fine, 1988; Swain and French, 2008) and experience negative attitudes from social and health care professionals (Prilleltensky, 2003; Thomas, 1997). Although these negative attitudes and lack of support hinder many disabled people from having children and starting a family, many of them do become parents and resist these belittling attitudes, which are often based on the idea that because of their impairment they will not be able to care for their children and it will be difficult or harmful for the child to grow up in a household with a disabled parent (Priestley, 2003; Swain and French, 2008).

These experiences and the historical discrimination against disabled people have led to an increased resistance of disabled people against disabling societal views and oppressive practices. Following from this, the concept of empowerment has been introduced in relation to disability research, support services and most aspects of disabled people's lives. Although definitions of empowerment vary, the concept is in principle centered on the idea of people gaining more control over their own lives (Dempsey and Foreman, 1997). The concept of empowerment is closely related to the concept of power, as its root word indicates, and different understandings of empowerment mirror different understandings of what power is. The notion of power has however been problematic when one attempts to define what empowerment is and how it can be achieved (van Driel, 2004). At the most basic level power has been understood as "power over," or dominance of one group over another. This conception of power has been dominant in the empowerment literature across disciplines (Lincoln et al., 2002). This dualistic understanding of power — that empowerment is about transferring power from those with power to those without it — has been criticized as an example of binary thinking and lack of attention to the workings of power and the complexity of power relations (Hartsock, 1983, 1985; Cooper, 1994; Browne, 1998; Page and Czuba, 1999; Pease, 2002; van Driel, 2004).

For our purposes, we reject the dualistic approach to empowerment and view it as a process that occurs in relationships (Page and Czuba, 1999; van Driel, 2004). Empowerment refers here to the power to act upon situations and the inner strength and self-esteem to do so both individually and collectively (Crewe and Harrison, 1998; van Driel, 2004). In this sense power exists neither in isolation nor is it inherent in individuals (Page and Czuba, 1999, p.2). It is a complex set of relations between individuals, groups and institutions that is created and transformed in the everyday encounters of social actors (Sprague and Hayes, 2000; van Driel, 2004). Empowerment is therefore a process of acting upon:

Oppressive, unequal, unfair and discriminatory situations … in which, people see themselves as having the capacity and right to act and influence the circumstances they find themselves in … and of recognizing the interconnectedness of cultural, institutional and personal and collective elements. (van Driel, 2004, p. 49)

A previously stated, disabled people have been marginalized, discriminated against, and excluded from society throughout Western history. These practices have been embedded in society's structures and in social relations as experienced by disabled people in their everyday lives: "For many disabled people the search for empowerment begins with, and is generated by, the experience of disempowerment" (French and Swain, 2008, p. 139). Disempowerment is therefore a social and historical concept that calls for resistance and empowerment of sub-ordinate groups in society (Sigurjónsdóttir, 2005).

The Internet has become an integral part of everyday lives and people use email, social networks such as Facebook, and listservs to keep in touch with people and make new friends. Research shows that the Internet can increase the sense of empowerment for first-time parents, as it allows them to connect with people to share their new experiences and it also gives them access to information about parenting and health related issues (Madge and O'Connor, 2006). The Internet makes it easier for people to share information and inform on issues important to them. Anonymity and the absence of the body online gives people freedom, especially people who belong to stigmatized groups, to develop multiple identities (Mehra, Merkel and Peterson Bishop, 2004). The idea of this online anonymity has not been well received by all in various disability communities because it permits passing as non-disabled. Rosemarie Garland-Thomson (1996) suggests that passing is caused by a discriminatory society that is intolerant of human differences. Passing as non-disabled is often viewed as an indicator that people are ashamed of being disabled (Linton, 1998), but a sense of pride is a central focus of the disability rights movements (Swain and French, 2000). Shakespeare (1996) argues that disability identity is important for understanding the complex relationship between individuals, society, and biology. However, there is a contradiction at the heart of disability politics: while seeking solidarity under a shared disability identity which is understood positively, the identification of people as disabled for labeling purposes is viewed highly negatively (Shakespeare, 2006). Therefore, disability can, in sense, be understood simultaneously as an identity and oppression (Campbell and Oliver, 1996).

The Internet has been held to high expectations as a new source of empowerment for marginalized groups in society because it has the potential to create new venues for new voices, but the negative aspects of the Internet, such as the digital divide and passing, might have been underestimated (Mehra, Merkel and Peterson Bishop, 2004; Rieley II, 2005). In this paper, through the lenses of (dis)empowerment, we focus on how disabled parents present themselves online and how they are represented in non-disabled web-discourse.

Methods

The paper is based on analysis of online articles and postings on the subject of disability and parenthood. We employed a critical historical analysis of discourse (Foucault, 1998a, 1998b), which brings attention to the historical development of ideas and the tension between different ideas. Jóhannesson (2010) identifies three important concepts regarding this form of analysis: discourse, discursive themes, and legitimating principles. Discourse is produced and reproduced consciously and unconsciously through words, ideas, silences, and practices. Discursive themes are continuously repeated and recurring elements of discourse (Jóhannesson, 2010). Discursive themes fall into clusters and patterns and when they become durable they fall into legitimating principles that are created in a historical and political discursive tension (Jóhannesson, 2010).

We adopted Jóhannesson's (2010) approach to historical discourse analysis and the following is a brief description of the steps we performed in our analysis. The first step indicated by Jóhannesson (2010) is the selection of topic or event to analyze, which had already been decided by the larger study we were working on and focused on disabled parents. The second step is to choose the data, i.e. what documents to analyze and how much data is needed, and what the time frame should be (Jóhannesson, 2010). We used the Google search engine to search for Icelandic keywords such as disability (fötlun), parenthood (foreldrar), mothers (mæður) and fathers (feður). The webpages were all in Icelandic and it is therefore likely that the participants live in or have previously lived in Iceland, which includes 318.452 inhabitants (Statistics Iceland, 2011). We decided not to limit our study to any time period, but instead analyzed all online postings that the Google search engine generated. More than 1800 online articles and postings were categorized, read, and analyzed. Approximately 1000 of the postings came from the webpage Er.is, which is a controversial and highly popular social network in Iceland with over 60.000 daily hits. It was originally intended for parents who wanted to share information and stories about their pregnancy, childbirth, and parenting, but the discussion boards now include topics such as classifieds, pregnancy, pets, and current events. A bit fewer than 200 posts were from personal blogs and approximately 600 articles and posts came from online news media and included readers' comments. There are limitations to using the Google search engine as the primary tool for data gathering. The Google search engine assigns numerical weighting to websites based on a so-called PageRank analysis. The numerical weighting is in part based on other pages that are linked to the page under analysis. Personal web pages commonly hold lower numerical weighting than corporate pages and therefore can be harder to find (GoogleGuide, 2011). To try to compensate for this limitation, a snowball method was also used and links and posts were followed or traced from one website to another.

The third step is the analysis of the materials (Jóhannesson, 2010) where we identified discursive themes, repeated and recurring elements of the discourse. The fourth and final step we took in our analysis was to identify or analyze the discursive tension in the documents and we looked for tension and conflict regarding the issue of disability and parenthood in the online material (Jóhannesson, 2010). Critical historical analysis of discourse brings attention to the historical development of ideas as well as to the conflicts and tension between different ideas, which makes this approach useful when exploring disability and parenthood from a social perspective that is in conflict with the traditional deficit approach to disability (Björnsdóttir, 2009; Björnsdóttir and Jóhannesson, 2009; Jóhannesson, 2010). All direct quotations from the Icelandic web-materials were translated into English by the authors of this paper.

Findings

We divide this part of the paper into two sections. First, we describe the four discursive themes that were dominant on the Icelandic websites, blog, and discussion boards: (1) disability metaphors, (2) negative attitudes, (3) passing, and (4) lack of advocacy. Then we discuss the durability of these discursive themes and (dis)empowering aspects of the virtual sphere.

Discursive themes: One discursive theme, disability metaphors, seemed more durable than others and occupied the great majority of the 1800 online postings and articles. These disability metaphors can be divided into two categories, self-criticism and invective. Disability metaphors were used as expressions of bad parenting, lack of abilities and as invective or accusations on discussion boards and blogs. Non-disabled people described bad parenting styles or abilities by using the "disabled mother/father" as a metaphor. An example of a disability metaphor as self-criticism was posted by a woman blogger who felt tired and lazy after a session in the gym and she did not feel like preparing dinner for her daughter. The blogger posted: "poor child having such a disabled mother." She describes herself as being disabled and therefore not able or willing to care for her daughter. This blog reiterates common stereotypes that disabled people are not fit to become parents and care for their children (Priestley, 2003). The blogger was neither disabled nor unable to care for her child, she did not feel like it and uses the disability metaphor to describe and make fun of her situation.

Another blogger, middle aged woman, used a disability metaphor as invective when she was outraged that a woman in her apartment building had gone out and left her child home alone with a dog: "she is fucking disabled doing this". The neighbor was not disabled, but according to the blogger her actions demonstrated reckless behavior and bad parenting by leaving the child by himself with a dog. It is difficult to interpret the role of the dog in the story, but it is apparent that the blogger lacks strong enough words to describe this recklessness and uses a disability metaphor to emphasize the seriousness of the matter. It is common that people in Iceland use invectives such as 'retard' and 'cripple' in their everyday lives and it seems like disability metaphors are embedded into on- and off -line Icelandic language (Björnsdóttir and Ásgrímsdóttir, 2010).

The third example of a disability metaphor is from a teenaged blogger who uses disability to explain the unfairness of his mother's action. He posted: "Everyone is going out tonight. Pretty awesome, but my mom is so mentally retarded that she does not allow me to go downtown at night". Goffman (1963) argued that those who deviate in some way from what dominant groups in society perceive as normal are often classified in negative terms and stigmatized. Social actors use these terms and phrases that have been used to describe stigmatized groups in their daily discourse when referring to other unrelated issues that do not have anything to do with the stigmatized group and usually without giving attention to the origin of the word or phrase (Burn, 2000; Goffman, 1963). The boy was not describing a mother with intellectual disabilities; he uses a disability metaphor in his attempt to portray his non-disabled mother in a negative way and employs the disability metaphor of intellectual disabilities (mental retardation) in order to undermine his mother's decision.

The webpage ER.is is a highly popular social network in Iceland where participants discuss just about anything and often very hostile comments are posted in the safety of anonymity. The majority of the material the search engine generated for our research came from this web-page. When members of this discussion board disagree about parenting or other issues they often attack each other with so called flames, which are hostile and to some extent tolerated on-line interactions. Popular flames are labels and invectives such as 'retard,' 'lunatic' and 'mental' used for the purpose of hurting or offending each other. The disability metaphors reflect the deficit model of disability that views disabled people as incompetent, tragic, and a burden on society. Disability metaphors have previously been described in literature, film (e.g. Jakubowicz and Meekosha, 2004), and everyday life (e.g. Björnsdóttir and Ásgrímsdóttir, 2010) and our findings suggest that disability metaphors are strong and widely used on the Internet and include expressions of bad parenting skills.

The second discursive theme is about negative attitudes towards disabled parents. Non-disabled people used the Internet to express disbelief and prejudice in the parenting abilities of disabled parents. Non-disabled people posted flames about disabled people and argued that they were not capable of being good parents and should not be allowed to care for children. This type of commenting was apparent in all the categories we analyzed, for example the Er.is online community, online news media, and personal blogs. An example of this kind of Internet flame and accompanying negative attitudes was posted on ER.is in spring 2010. A disabled woman, a wheel chair user who needs assistance in most aspects of daily life, and her non-disabled husband had been interviewed on local TV about wanting to have children and start a family. The discussion boards were on fire and dozens of people posted hurtful comments about their dream of becoming parents. In (often anonymous) posts, non-disabled people voiced their concerns about her ability to care for children, claims were made about the woman not being able to fulfill the physical and emotional needs of a child and many feared if the couple would start a family it would result in a financial burden on the State. The flamers seemed to lack all concerns for the couple's feelings and rights, even though they knew that the woman was an active participant on this discussion board.

Another example of negative attitudes towards disabled parents is also taken from the Er.is web-page and the topic is adoptions and disabled people. Icelandic adoption regulations (nr. 238/2005) state that physical and mental impairments may disqualify people from adopting children and according to this particular discussion many people agree with these regulations. Many participants claimed that people with "certain kinds of disability" should not be allowed to adopt children because it would not be fair to the adopted child. One discussion board member claimed she had nothing against disabled people, but did not trust physically disabled women to care for children. Jenny Morris (1997) argued that someone who needs assistance and is perceived by others to be cared for would not be considered able to care for a child. The idea of care undermines the right of disabled people for the assistance they need to be able to live a family life and it is apparent that these online social actors do not consider people who receive personal assistance as independent and their online comments and posts are guided by the deficit model of disability, which seems to override the disability policy of equal participation that has shaped Icelandic legislation and practices for over 30 years.

Not everyone (within 5%) who participated in these particular online discussions was hurtful and belittling and some tried to defend the rights of disabled people to have children. The following is an example of a more positive standpoint: "These are prejudiced. Try to be open-minded. The dad is a fully able person and I cannot see anything wrong with them having a child together." These comments met much resistance from the online community and the fact that the man was not disabled had little influence on the discussion. It is interesting how the Internet flames and discussions about parenthood are mostly focused on disabled women or mothers. Sometimes the flamers were willing to accept disabled fathers if they had non-disabled partners, but disabled mothers usually met much resistance and prejudice. Historically, in Western societies mothers have been assigned the primary responsibility for their children, i.e. they are supposed to care for them and keep them healthy and safe. This subjects women to what has been termed "mother blame", which refers to the blame given to mothers if something threatens their children's wellbeing. Disabled mothers are particularly susceptible to this "mother blame" since their impairment might make it difficult for them to care for their children or reach the so called ideal motherhood (Blum, 2007; Malacrida, 2009).

Repeatedly, disabled parents were compared to drug addicts in the virtual sphere. The following is taken from a discussion board in 2010: "At least the drug addict can stop doing drugs and take care of his child. She can't stop being disabled to care for her child." This comparison of addicted parents and disabled parents is interesting. Drug addicts hold a low social status in Iceland and are not commonly considered parent material and research has shown that their children are at high risk for abuse and neglect (e.g. Haugen, 2004). It is common in Icelandic media to compare different social groups that are perceived to be a social problem. For example, disabled women are compared to working class single parents and disabled people are compered to drug addicts and asylum seekers (Traustadóttir et. al., 2011). These Internet flames, comparing a disabled mother to a disabled drug addict, demonstrate negative attitudes that disabled people are faced with in relation to parenthood and family life in Iceland.

It was difficult to find web-pages or blogs about parenting by disabled parents because most disabled parents online did not reveal their impairment, or were passing as non-disabled, which is the third discursive theme we will describe in this paper. The following is a typical description of a blogger who does not indicate that she is disabled:

My name is Anna Jónsdóttir and I am 25 years old. I have a wonderful family, husband, daughter, and two stepchildren. I am in college and doing well. I have good friends and many hobbies and I thank God every day for my life, my family and my friends who have been great support and always believed in me. I love my family.

The only reason we know that this blogger is a disabled mother is through our work with disabled people and the disability movement in Iceland. Since many of the bloggers do not announce on their web-pages that they are disabled, the search engine is not able to filter these blogs from non-disabled parenting blogs. The disabled parents describe often mundane activities such as doing the laundry, going to the park, or dealing with schools in the very same manner as non-disabled parents do. These disabled bloggers are not participating in any kind of self-advocacy; they are not consciously informing the world about the intersection of disability and parenthood. It is difficult to determine whether it is an (un)conscious attempt to construct themselves as "parents" instead of stigmatized "disabled parents," if they are indeed passing as normal, pretending to be non-disabled, or denying the impairment. It is the absence of the body online that makes them completely blend in with the non-disabled parent discourse. Some parents did post pictures of themselves, their children, and family members and these were very typical pictures that could be from any family photo album, but the impairment becomes visible in some cases for example by the presence of a wheelchair, a different kind of visible impairment, or in some cases by low literary skills as in the case of some parents with intellectual disabilities.

The last discursive theme, advocacy, will be discussed in terms of silence or absence from the discourse. The search engine was only able to find one PDF document with information in Icelandic about disability and parenthood. The document was on a website published by the Organization of the Disabled in Iceland (ÖBÍ) and contained information about parenthood, stories about disabled parents, and arguments about people's reproductive rights. We were unable to find any blogs or websites where disabled parents were actively advocating for parenthood. We were also unable to find any information especially for disabled parents and to our knowledge there is no Icelandic website dedicated to parenthood and disability. There are Icelandic parenting web-pages that have all basic information about issues related to parenthood, but the issue of disability is usually not addressed on these sites in relation to parenting. There is however myriad online medical information in Icelandic about various impairments and about parenting disabled children. General parenting information is as useful for disabled parents as non-disabled parents, but research has shown that specific information for disabled parents is essential, and that role models are important to young disabled women who are contemplating having children (Gunnarsdóttir, 2010). While much self-advocacy related material can be found in English, it is obviously only accessible to people who can read and understand English. Also, the information on these websites is not always relevant to the Icelandic context. Interestingly, it came to our attention that in a couple of instances when discussion board participants were looking for information about disabled parents, other participants advised them to speak to the "disability study team [scholars] at the university" instead of the disability activists or disabled parents. This concurs with the media discussion on parenthood and disability which has mainly relied on the perspectives of disability scholars at the University of Iceland (Sigurjónsdóttir, 2008).

The lack of advocacy and information related to parenthood and disability raises many questions. Why have disability activists and organizations remained silent in the virtual sphere? Is it due to the threat of flame wars and negative attitudes? Has the disability movement chosen different and perhaps private venues for this discussion? Or has the disability movement been prioritizing the basics, such as education, employment and housing? These are questions that the Icelandic research and disability communities need to seek answers for to move forward towards social justice.

Virtual space of (Dis)empowerment:

When discursive themes fall into durable patterns they become legitimating principles and such principles create fields (Jóhannesson, 2010). Although we were able to identify four recurrent discursive themes in the virtual discourse on disabled parents, we were unable to establish a social field around that discourse. The virtual sphere is not a very stable space and constantly changes. Information is continually being added and removed and edited and therefore it becomes problematic to identify historically constructed legitimating principles that would shape a particular social field. Also, we failed in our attempt to identify the social field of virtual self-advocacy of disabled parents since the discursive theme of advocacy was based on silence or lack of advocacy. We conclude that despite the potential of the Internet to provide a platform for different groups to voice their thoughts and opinions, disabled people in Iceland have not carved out virtual space for advocating their right for family life and parenthood. However, the discursive themes were recurrent and give us valuable information about public opinions on disability in Icelandic society and the (dis)empowering qualities and effects of the virtual sphere.

By focusing on the intersection of disability and parenthood in a virtual discourse we identified, as mentioned before, disability metaphors as a discursive theme, which is shaped by the medical or deficit approach to disability. It focuses on biomedical conditions and limitations and portrays disabled people as a family and social burden, dependent on non-disabled others for assistance and care (Barnes and Mercer, 2003; Björnsdóttir, 2009). Although, some might suggest that metaphors are not supposed to be taken literally and are only intended to bring poetic flare to the text, we claim that they can also uncover people's thoughts and actions (Lakoff and Johnson, 1980). Through the deficit lenses, disability is viewed negatively in terms of limitations and inabilities and therefore a perfect metaphor for bad parenting skills. Being "disabled" also means being "invalid" and "incapacitated" and invalid and incapacitated parents are "bad" and "powerless" parents. The metaphor, therefore, reflects society's perception of disabled parents and by using disability metaphors social actors reiterate the negative ideas that disabled people experience in their daily lives, often from close relatives and friends, but also from professionals and society in general (Preistley, 2003; Sigurjónsdóttir, 2005).

It has been reported that Icelandic youth and adults commonly use disability labels as invective slang, where they use the labels as insults or to emphasize their negative attitude or disgust toward people and matters (Björnsdóttir and Ásgrímsdóttir, 2010). These invectives are varied and touch on most social issues and social situations and therefore not unique for the issue of parenthood or the virtual sphere. The invective slang, however, reflects negative attitudes toward disabled people and the negative attitudes especially directed toward disabled parents were easily identified in the virtual sphere, on listservs, discussion boards and social networks.

The virtual sphere is ideal for private and collective reinventions and has all the potential to be empowering for marginalized others in society. Being able to access information, connect with people all over the world and become an active member of a virtual community can be empowering, but after carrying out this research we have learnt that the Internet has many strong disempowering qualities. Being constantly reminded about society's negative attitudes towards disability that are reflected in the use of disability metaphors and risking flames from other participants in the virtual sphere can be understood as disempowering. In recent Icelandic research, disabled women state that they feel they lack authority over the issue of disability in the chat-rooms and are often hurt by the prejudice towards disabled people in relation to parenthood expressed on-line (Gunnarsdóttir, 2010).

The reinvention of one's identity is in part made possible by the absence of the body in the virtual sphere and also by the opportunity of anonymity. In many ways the virtual sphere lacks social differentiation. People have the power to choose if they want to be unhidden and known online or if they want to take on limited or total anonymity. One has the freedom of being oneself and risk being flamed, as well as the freedom of being like the mass — being like everybody else. However, anonymity is not only reserved for members of stigmatized and subordinated groups in society, it is for everybody including the dominant non-disabled majority. The absence of the body, as well as anonymity, has also created a tool for oppression and disempowerment. The Internet flames directed toward disabled parents needs more in-depth analysis, but it seems that some flames are more deliberate than others. Online comments are however easily taken out of context and misunderstood, but flaming is recognized and to some extent tolerated virtual behavior. The anonymity of the Internet also limits the accountability of the flamers and at present time in Iceland only one court case, to our knowledge, has been filed where an anonymous flamer was unmasked by the authorities and charged with slander. The limited accountability of what is posted online creates an ideal tool for dominant groups to (re)produce their place in society and an ideal tool to disempower marginalized groups.

In spite of the Internet's empowering potentials, we do not have any evidence of it being empowering for Icelandic disabled parents. The discursive theme of passing suggests that disabled parents choose to be or are unconsciously silent about their impairment in the virtual sphere. Non-disabled and disabled people perform their position in society, their embodied inequalities and privilege. In "real" life disabled parents simultaneously perform the devalued position of disability and valued position of parenthood. There is a tension between the discourse of disability and discourse of motherhood and the deficit understanding of disability threatens their status of "good" parents. The absence of the body in the virtual sphere allows disabled parents to leave, to some extent, their embodied disability behind, i.e. they are not forced to display their bodies online. However, this cannot be interpreted as a space of empowerment since these parents do not individually demonstrate their inner strength to act and resist society's belittling views and collectively they do not participate in advocacy for parenthood. Research has shown that young disabled women want more discussion about motherhood between disabled people as well as publicly, and they emphasize the importance of role models for disabled people and society to learn from (Gunnarsdóttir, 2010). The disability movement in Iceland has to some extent neglected the issue of parenthood, at least in the virtual sphere, and we want to conclude by emphasizing the importance for disability activists to use any means available to speak up for equality and human rights.

Conclusion

The deficit understanding of disability has shaped the online discourse on parenthood and disability, which led to the (re)presentation of disabled people as bad or incompetent parents. Disability metaphors and non-disabled people's use of disability labels to describe their own inabilities and limitations play a strong role in the discourse. That is why we were at the same time surprised by and understanding of disabled people's online silence regarding parenthood. The historical and social construction of the disabled parent as unfit and incapable of caring for others is reflected and (re)produced on the blogs and discussion boards. Internet flames threaten disabled people's status of parenthood and nobody wants to be attacked by hostile words and opinions. However this virtual space is optimal for disabled people to act collectively and to speak up against these disabling perceptions. The Internet has the potential, in that sense, to be empowering for disabled people and parents.

Disabled people's access to computers and the Internet in Iceland has not been documented and there is the possibility that the silence can in part be explained by disparities in access. We believe that the potential of the Internet have been overestimated regarding empowerment for stigmatized and marginalized groups and the oppressive and disempowering potentials underestimated. The Internet is also empowering for dominant groups in society and therefore provides opportunities to disempower subordinate groups who are struggling for resources and space in society. We hope that this paper will bring attention to the possibilities and the limitation of the Internet as a tool for self-advocacy of disabled parents and argue for the need to disrupt the deficit and ableist virtual discourse about disabled parents.