”Who has the time to discuss gender equality in that chaos?” : - Mothers perspectives about gender equality when having a child with special needs

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”Who has the time to discuss gender

equality in that chaos?”

- Mothers perspectives about gender equality when having a

child with special needs

Sara-Lina Lock

Supervisor: Johanna Gondouin Examiner: Marietta Radomska

Gender studies, LiU

Master’s programme:

Gender Studies- Intersectionality and Change Master’s thesis 15 ECTS credits

ISRN:LIU-TEMA G/GSIC1-A—20/025-SE

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Abstract

This thesis aimed to explore mothers experiences of having a child with special needs through a gender equality perspective. Four mothers were interviewed through a semi-structured interview guide. Feminist disability studies and emotional labor with an intersectional

perspective have been the guiding framework. To analyse the empirical material I have used a qualitative thematic analysis. Research has shown that heterosexual couples with children in Sweden are becoming more equal in terms of the unpaid” invisible” household chores. However, parents who has children with disabilities and in need for more extensive care tend to take on more traditional roles. The findings have shown that mothers are more often the one who takes care of the necessary chores concerning the child’s disability. At the same time, she also needs to take a step back in her career or not able to have work outside the home. For some of the families, the necessary chores have been divided into administrative or practical tasks were one parent has done more than the other. To get a deeper knowledge about why it was that certain gender division I have found that the deep emotional connection to their child had an intersectional effect in the decision to stay home for these mothers.

Keywords: Motherhood, disability, everyday life, gender equality, intersectionality, emotional labor, identity shift

Acknowledgement

First, I want to thank the mothers who participated in this study, I am so grateful for your contributions. I would also like to thank my supervisor Johanna Gondouin for your help, guidance and expertise

throughout this process. Lastly, thank you Oscar Fredriksson for your endless love, support and encouragement.

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1. Introduction

“Could motherhood be one of the hardest occupations in the world?” Welch, an American juice company has mapped out how much time each day 2000 mothers with children in the ages between 5 to 12 perform different task concerning their children such as activities, cooking and homework. The result showed a 14-hour workday. The day started at 6.23 am and around 8.30 pm the mothers could check out at night, which gave the mothers on average 1 hour and 7 minutes alone time for themselves. The schedule is equal to 2, 5 full-time jobs without any day off during the entire week ( SvD, 2018).

In societies within the global north it can be a challenge to balance work and family, which can create tension in today's modern society (Isaksen, 2011). According to statistics Sweden (SCB, 2019) families in a heterosexual relationship are becoming more and more equal in terms of paid work in the Swedish society. The distribution between paid and unpaid home-and care work among women home-and men has been reduced. Statistics from the 1990s showed that women, in the ages between 20-64, stood for approximately 10 hours of unpaid work in total per week while the men stood for 6 hours. In 2010 the women stood for approximately 8,5 hours and the men for 7 hours.

A report from National Board of Health and Welfare (2017a) shows that families in Sweden with a mother and a father who has a disabled child tends to take on more traditional gender roles in the home compared to parents with children without disabilities. To have a child with a disability can often cause great stress and pressure on a couple’s relationship as the care of the child along with the practical chores in the household needs to be prioritized, not just during the toddler years since the need for extra care often remains longer than that. More extensive care for the child can make it more difficult for both parents to gain employment. Additionally, it is not uncommon for some parents to have to work fewer hours, change jobs or work as an assistant to the child themselves. More frequently this falls on the mother who tends to be the one who stays home. Therefore, to understand the intersectional effects of gender equality and disabilities further research is needed.

1.1 Aim and purpose

The aim and purpose of this thesis are to explore through a gender equality perspective mothers experiences when having a child with special needs. The focus is to examine their view on gender roles in the family, more specifically the division of chores concerning the child’s extensive needs. This has led to the following research questions:

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1.2 Research questions

- How do the mothers experience gender roles in their daily life when having a child with special needs?

- Why does the experienced gender roles appear, in said context, according to the mothers?

1.3 Background

As the writer of this thesis I have a personal and an occupational interest in exploring the field of disability. I have worked both in schools with children with special needs and with grown-ups. My sister has a comprehensive disability since birth which has for certain shaped and developed my interest and passion for this topic from the beginning.

As mentioned in the introduction, parents to a child with a disability tend to fall into more traditional patterns of gendered roles. This affects how the responsibility between the mother and father is distributed. For that reason, it is important to keep discuss what consequences this can cause for mothers. Gender equality has grown into the Swedish debates and as something to strive for in every household. Nevertheless, a mother with a special needs child faces more challenges while striving for the same equality.

Sweden passed a law in 1994 intending to support individuals with different disabilities, called LSS (1993:387) It can be translated as law of support and service to some with disabilities, people with disabilities may be entitled to support under the Act on Support and Service for some Disabled People. The purpose of the law and the efforts is to ensure that people who are covered by the law achieve equality in living conditions and full participation in social life. People should be able to get the help they need in daily life and also be able to influence what support and service they receive. The goal is for the individual to have the opportunity to live as others (National Board of Health and Welfare (2017b).

In this thesis, the informants call it the assistance when referring to support of their children’s need in their everyday life. However, it is essential to mention that the law was not established and available for these families in the thesis until their children were in their early teenage years.

1.4 Concepts and definitions

In this section, the concepts and definitions used in this particular thesis will be presented. These are important to explain more in detailed early on since they will have a central part

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1.4.1 Motherhood can be seen as a relationship between a mother and child. Motherhood and gender can be defined as a social institution were norms, expectations and roles have typical demands, goals and skills (Holm, 1993). In this thesis, motherhood also refers to the aspect of having a child with some sort of disability. National Board of Health and Welfare (2017a) refer motherhood to a child with special needs to different motherhood which can contribute to personal growth, increased personal strength, a higher level of empathy and respect for different people, while also have more meaningful and deep relations. This kind of motherhood can as well be defined as resourceful, well-knowledgeable and understanding.

1.4.2 Disability. Disabilities are a description of a physical and psychological lower function of one or several parts of the human body. Disability can also be defined as when a person's activities are restricted as a result of our current way of organising society that takes little or no account of people with physical disabilities and for that reason makes it impossible for them to participate in ordinary social activities (Giddens & Sutton, 2013).

1.4.3 Gender and gender roles. In this thesis, gender and gender roles are seen as a social concept. The naturalistic explanation is that sex refers to the biological characteristics of the body while gender refers to social behaviour, gender roles and personal gender identity is, however, something that feminist theory has been critical to (Butler, 1988).

“Gender is not passively scripted on the body, and neither is it determined by nature, language, the symbolic, or the overwhelming history of patriarchy. Gender is what is put on, invariably, under constraint, daily and incessantly with anxiety and pleasure, but of this continuous act is mistaken for a natural or linguistic given, power is relinquished to expand the cultural field through subversive performances of various kinds”.

(Butler: 1988:531)

2. Previous research

2.1 Motherhood and gender in a global north perspective

The feminist movement and its development have brought a new set of rules for framing the work and family of both men and women in societies. However, according to Hochschild (1997) in terms of valuing work and family time, the author mentions something called “traditional” model in which home and work each shows gender-specific traits. Some men on top of a company and the business ladder are fleeing neither a miserable workplace nor a stressful home. At the office where they devote most of their waking hours creates a pleasant

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“home” for themselves while their real home develops more into a summer cottage retreats. The one who is left to manage the home and children are the wives. Home is not a refuge from the workaday world for the wives rather a potential fulfilling world in its own right. A description of this old-style model of a work-family balance in which each sphere of life is given to one gender has been decreasing even among the top of the chain in companies. This magnetic pull of work has been drawing some executive wives out of the household while those who remain the appeal of housewifely and motherly responsibilities and desires has probably reduced.

The non-labour-market time with household work and caring for children, that mothers spend time after coming home from work is something that Brandon (2007) highlights. Balancing work and family responsibilities is every so often a challenge for a family to handle and for the mother to have time for herself. However, a mother with a child who has a disability reports that they have little or no time for themselves. Beyond the responsibilities that every mother face in terms of caring for a child a mother to a disabled child have more pressure and several additional tasks that are associated with their children’s disabilities.

Ryan and Runswick‐Cole (2008) sought to critically explore how mothers of disabled children have been portrayed in previously done literature. The medical model of disability has

traditionally been used in the research of mothers to a disabled child. Consequently, the authors argue that it is necessary to recognise the role that the mother has in negotiating disability issues. To do that, it needs to be put away some static positions and stereotypical representations with understandings of disabled children and other family members. A tendency is that the mother takes overwhelming responsibility for the caring. Mothers to disabled children often expand this role for a longer period since the child needs may not change. As mention earlier, a part of the mothers caring role includes advocating for their child’s needs in meetings with both health and educational professionals which creates several roles for the mother to cope with.

Although it was the dream of middle-class feminist in the 1970s that a woman could in facts have it all, equitable distributions of household labor and interesting careers. Still, a mother to a disabled child tells a different story, which Scott (2010) points out. There are plenty of demands of both family and employment that needs to be considered. Single unemployed mothers face an intense loss of confident of their abilities and described themselves as also disabled while the single employed women were more likely to have a college degree than

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did their best to remain in the labour force despite handling challenging conflicts with their care work, given the demands on their children’s extra needs and the limited support to assist them.

Personal narratives concerning her child with a disability is something that Zibricky (2014) presents. The findings show categories of emotions on motherhood to a different child. Judgement is one category; it entails the theme of judgement experienced from society. Motherhood and disability intersect and judgement from the outside perspective could be incredibly harsh, both ignorance and condescending behaviour were experienced from educational and medical professionals. It was also criticism, unwanted advice from family members which could form a critical view be based on assumptions from constructed ideologies about motherhood and disability. Zibricky (2014) expresses that since she has a personal experience as a mother of a disabled child, she has been fighting with the beliefs and opinions created by authoritative institutions of society such as the medical, education-system and legal structure. There is a knowledge created by these institutions in the dominant culture of society to use in the construction of ideologies. The ideologies are to be acted upon by oppressing and marginalising various groups in society. It concludes that patriarchal beliefs in a dominant culture have affected and dictated the role of motherhood for centuries. Still, more recent research has transpired to move beyond foundational arguments of oppression by patriarchal dominant cultures and further into newer arguments that motherhood intersects with oppression including ethnicity, gender, and class but less how it intersects with disabilities.

2.2 Motherhood and gender in a Swedish context

Care work is connected to female traits and femininity and Gavanas (2010) describe that traditionally the Swedish domestic service within housework and care has been carried out by either unpaid female family members or providers who are publicly funded, care providers. Concerning the impact of gender, Olsson and Hwang (2006) made a comparative study about mothers and fathers’ well-being and involvement in paid work and child- care when having children with intellectual disabilities. 179 household with two parents and a child with a disability were compared to 196 two-parent- household and a child without a disability. The result showed that having a child with disabilities made an impact on the terms of paid work and well-being for the parents. The result indicated that the mothers of a child with a disability were more likely to be affected than the fathers in their participation in paid work and their well-being. Mothers with a disabled child showed lower levels of well-being compared to

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fathers and mothers without disabled children. The study argued that the explanation for this might be the more demanding parenting role that the mothers more frequently was active in. Another explanation was that the fathers were less restricted by having a child with a

disability in terms of lower levels of depression due to remaining active in paid work and other roles.

3. Theoretical framework

3.1 Feminist disability studies

Disability studies are today a well-established field of research. During its development, it has moved further away from the applied area of medicine, social work, and rehabilitation and deeper into a lively new field of examination with a critical category of identity studies. However, Garland-Thompson (2002) continues by emphasizing many of the specialists have not recognised that disability studies are a part of the greater undertaking that can be known as identity studies. One domain of feminist theory that disability analysis is complicated is in terms of identity.

Feminist theory has productively and rigorously critiqued the identity category of woman, on which the entire feminist enterprise seemed to rest. Feminism increasingly recognizes that no woman is ever only a woman that she occupies multiple subject positions and is claimed by several cultural identity categories. This complication of a woman compelled feminist theory to turn from an exclusively male/female focus to look more fully at the exclusionary, essentialist, oppressive, and binary aspects of the category woman itself. Disability is one such identity vector that disrupts the unity of the classification woman and challenges the primacy of gender as a monolithic category. (Garland-Thompson, 2002:30)

Disability identity is always in transition and is an identity category that each and one of us can enter at any time and will eventually do so with age. For that reason, there is an essential

dynamism of identity that can be revealed within disability. Several disability scholars are lacking in knowledge about feminist theory or of women’s studies institutional history.

Garland-Thompson (2002) point out that feminist theory might not be able to be reassigned entirely to disability studies, although it can provide deeper perspectives, methods, and insights into its original thoughts. With that said, the theories could benefit from one another and underline the importance of incorporate intersectionality into the perspective. The author claims that the scholars who are familiar and knowledgeable with feminist theory can be more developed and

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analyses of intersectional gender, it also brings in the matter from the system of abilities/

disabilities together with the aspects of ethnicity, sexuality, and class. In feminist disability theory, the system ability/disability is introduced as a category of analysis into a varied and dispersed organisation where it aims at extending the existing notions of cultural diversity.

Feminist disability theory speaks to such a broad feminist concern as the unity of the category woman as well as the status of the actual lived body and politics of appearance that, as

mentioned above, disability is to be found in all of us.

A feminist disability theory introduces what Eve Sedgwick has called a "universalizing view" of disability that will replace an often persisting "minoritizing view." Such a view will cast disability as "an issue of continuing, determinative importance in the lives of people across the spectrum" […] In other words, understanding how disability operates as an identity category and cultural concept will enhance how we understand what it is to be human, our relationships with one another, and the experience of embodiment. The constituency for feminist disability studies is all of us, not only women with disabilities: disability is the most human of experiences, touching every family and-if we live long enough-touching us all. (Garland-Thompson 2002:5)

Feminist disability studies can reimagine disability in a new light according to Hall (2011). The author argues the significance of understanding feminist disability is not just a put-together of feminism and disability studies. Since that can reduce the critical lens and perspective as well as its potential to intervene in both theoretical and social transformation. In addition to that, it could reimagine gender too. The implication within feminist disability studies that the “women” is disabled by compulsory heterosexuality and patriarchy is encountered with uncertainty. To explore conceptually and the lived connection between gender and disability within feminist disability studies could help historical and another ongoing interrelationship between different forms of oppression more visible. The author raises questions about insights in identifying and critiquing certain forces of historical, cultural, social, and political of defining and declaring a disabled life.

What is the actual relationship between gender and disability? What role does gender play in the experience of a disability? How do institutions, global economic inequalities, and ideas of citizenship and the nation produce gendered, raced and classed disability? (Hall, 2011:7)

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3.2. Emotional labor and an intersectional perspective

Arlie Hochschild coined the term “emotional labour” 1983 in the book The Managed heart – Commercialization of human feeling.The aim was to describe how certain occupations within the service sector required the management of feelings to fulfil their profession. For instance, a flight attendant should make the travelling passenger feel safe and comfortable. The foundational thoughts with emotional labour were that these flight attendants do physical work in terms of moving heavy metal carts down an aisle. Besides from that physical and mental labour, the flight attendant does something more which is the part being defined as emotional labor.

What is emotional labor? What do we do when we manage emotions? What are the costs and benefits? What, in fact, is emotion? What are the costs and benefits of managing emotions, in private life and at work? (Hochschild, 1983:9)

Further on in another study, Hochschild (1997) examines parent’s views on work and about the balance between free time at home and time away at their workplace. The result of it showed that a person generally tends to spend more time on what they become more valued for and what they value most in life. This could explain why a working person can feel more at home at work since they may feel more competent and appreciated there. It also showed that it was more likely for them to expect a more available, certain emotional support at their workplace. The workplace is the so-called first shift. The first shift lasts longer than the second shift that starts at home. According to the author, the second shift is usually rushed through for the parents to have some time over to the family. Parents try to hurry and organise better to obtain more free time, however, that forces the parents to instead participate in a third shift. The third shift is where they need to take in, understand and manage the emotional consequences of the second shift that were rushed through. It would be interesting to bring in the aspects of disabilities in the home and reflect upon if it could be seen through different shifts. Garey, Hansen and Ehrenreich (2011) argue that several feminist scholars still agree on that among family members the women are leading the way of being one of the unpaid care-workers tending to the needs of children, elderly, sick or disabled. Moreover, they have argued that the demarcation between the work and family, between private and public, has never really been separated from each other. Therefore, there are many unpaid household- and family activities that constitute as work as well but are still so-called invisible work.

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Since emotional labor has been used in different ways, it has been moved more from the

workplace and into the household. It has developed into different branches and several scholars have used it to designate for the unpaid housework that often falls on the women do take care of in the family home. As a result of that, feminist researchers have brought in intersectional aspects of it. Intersectionality is a term coined by Kimberlé Crenshaw as a way to help explain the

oppression against African-American women and it can be used as an analytical tool or an approach. Crenshaw describes intersectionality as a lens through which we can see where power comes and collide, where it interlocks and intersects (Crenshaw, 1989). Further on, it seeks to draw attention to how privilege and marginalisation are created and at the same time maintained in the interplay between different systems of power. While Crenshaw was mainly focused on gender, ethnicity and class, subsequent research has broadened the scope of analysis to also include

categories such as age, sexuality, religion, and ability. Giddens and Sutton (2013) add that

intersectionality refers to a complicated interplay of a variety of social factors that shapes the lives of individuals. Intersectional research has made the comparatively simple class analysis even more complex. According to the authors, to only analyse class or gender or race can today be perceived as an analytical and political act of excluding.

A great deal of the previous research concerning emotional labor has according to Redden and Scarduzio (2018) focused on individuals’ employees’ experiences. Exploring how the social construction of a certain type of work can both influence and challenge one working person’s identity. Service and care work, similar to what has been mentioned earlier, is more often performed by women and many scholars have investigated gender and emotional labour in that context. They give an example of female teachers, particularly women of colour can experience a higher emotional burden at work. In this thesis, the identity aspect has shown to be important in understanding the intersectional interaction between mothers and their children with

disabilities, how it has re-shaped their lives and given them multiple identities to cope with.

4. Method and approach

4.1 Choice of method

This thesis has used a qualitative approach. Qualitative research tends to study a phenomenon in-depth to understand how and why an individual’s perception of the reality of a certain issue (Bryman, 2011). Since this is a small-scale study of a few mothers’ experiences about the chore division of the child’s special needs between her and the child’s father, this felt like the most convenient. Still, to gather the needed material semi-structured interviews with four mothers have been done. A semi-structured interview-guide was suitable for the way I wanted

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to arrange the interviews. By having questions that were rather open made it possible for development in the answer. At the same time, I preferred to have some guidelines in the conversation.

4.2 Selection of informants

The sample of informants was strategically chosen from acquaintances to me. By strategically I mean that it was chosen from where the most relevant information could be found. The criteria that the informants needed to meet in this thesis was: they were identified as women, mother to teenager or grown-up who has some sort of comprehensive disability. Then from her perspective share experiences concerning gender equality between her and the father regarding the special needs around the child. Through my work as a personal care assistant with a person with a disability and relatives in the same occupation, I had the opportunity to contact parents whose children have more comprehensive disabilities. Three of the informants have lived here in Sweden all their lives, one grew up in a neighbour country. They all

currently live in the south-eastern part of Sweden. It was not my intention from the beginning that three of the informants would have a teaching background.

According to Bryman (2011), it is important to have in mind that the selection of informants has a great deal in how to collect the necessary information. It requires deep reflections of the different aspects of the socio-economic background of these mothers in the study to analyse the result. The informants have quite a similar background in this study. They are white, middle-class, and living in a heteronormative relationship. The study focusses on the experiences of the child’s first 18 years. It can be seen as difficult due to time aspect since three of the mothers have older children in their later 30s and but then the mothers have the perspective of how it was before the law of assistance came in force in 1994. The fourth mother is younger, and her child is in her teenage years which might make the memories more clear to remember. Therefore, it is also important to have in mind the generational aspects of opinions. It is necessary to say that the younger child does not have an as comprehensive physical disability compared to the other children. Despite that, contrast can be found even in the most similar way of living, all these background aspects need to be considered in the research process.

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4.2.1 The informants

In this following table, essential information about the mothers in this study will be presented.

The mother’s names are fictitious.

Informants Work profession when the child

was under 18 The child’s diagnosis

Anna Runs a hairdressing company Cerebral pares

Norah Middle school teacher Cerebral pares

Lena Preschool teacher Rett’s syndrome

Emma Secondary teacher Autism

Table 1. Basic information about the mothers.

4.3 Choice of analysis

When searching for a suitable qualitative analysing tool for the qualitative method, I stood between a narrative analysis and a thematic analysis. I chose the latter option. I found that thematic analysis is interesting in its way of searching for certain themes from the results. Thematic analysis is one of four analyses within narrative research. Ryan and Bernard (2003) describe the process of searching for themes as a way of identifying frequently used words from, in this case, material from interviews. It is suggested that the researcher try to notice repetitions, themes that occur frequently and then organise this into a core- and subthemes. However, a common criticism of a thematic analysis according to Bryman (2011) is a lack in the description of clear techniques. By that the author means compared to other strategies such as critical discourse analysis or grounded theory, thematic analysis can lack descriptions from clear techniques how it has been done. As searching for themes can be seen as an activity in many approaches within a qualitative analysis of data, for some a theme can be more or less a code, while a theme for others might be more than just a code and consist by a group of codes. When performing this analysis of the study the approach has been to find patterns, recurring comments and often mention thoughts in the reflections from the informants and sum it up into three strongest themes in the end.

4.3.1 Data collection and processing

The idea of having interviews with informants in person was something I looked forward to. I had some thought about using a focus group first but since this can be a sensitive topic for the mothers it did not felt suitable either. Unfortunately, the unexpected development of the

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current pandemic also affected how interviews in persons could be practically done. However, this did not change my decision to use interviews, but I adjusted them to the current circumstances and for that reason, all of the interviews were performed over the phone. The gathered material from the interviews was all recorded from the conversations. By doing that, I as the interviewer could focus only on what was being discussed then by writing at the same time. The interviews were performed in the middle of April and they lasted between 34 to 62 minutes, the language was in Swedish. The transcription of each interview was transcribed directly or close after to maintain the information as new as possible. According to Hjerm, Lindgren and Nilsson (2014), the process of transcribing is a crucial part to sort the information from the interviews and find similar patterns to put into different main themes and subthemes. To identify the most important and relevant aspects from the answers, it was necessary to use a strategy of coding in-depth. This process made it easier to remove parts that were not as much relevant and contributed as much to the result.

4.3.2 Validity and reliability

In every research procedure, it is necessary to reflect on what kind of data you are producing. Therefore, in this thesis, I have thought about the validity and reliability of my research. According to Bryman (2011) validity stands for if the study has been able to answer the intended purpose and research questions while the reliability makes sure that the quality of what has been done is good. In this case, it has been important to reflect on this qualitative research choice of interviews. I have to the greatest extent tried to keep the language, sentence structure and from the informants and only changed it if necessary to understand the message in the sentence. My thoughts concerning the reliability of the material are that even if it might make a person uncomfortable to be recorded during an interview, I decided that since I would not have gained all the information in the same extensive and more thorough way if writing by hand. Also, it might have interrupted the interview too much. Each and one of the informants gave their consent before I started to record the conversation.

4.4. Ethical considerations and situated knowledge

When conducting research there is plenty of ethical viewpoints to have in mind and think about. The Swedish Research Council have ethical principles to considerate namely the requirements of information, consent and two concerning confidentiality. These ones felt suitable to have in mind since I have conducted interviews with personal and private material.

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The mothers were contacted and asked if they wanted to anonymously participate in the study, if needed to think about it they contacted me when they had decided.

 The information requirement means that the researcher should inform the interviewers about the purpose of this current study. When asking to participate in my study I also told them about what the reason for it was, that their participation was voluntary and that they had the right to drop out at any moment.

 The consent requirement means that the informants had the right to decide for themselves about their participation. For example, if being under the age of 18, it usually involves consent from a parent or a guardian. Since all of the mothers were older than 18, this requirement was not needed.

 The first confidential requirement is to make sure that personal information concerning the informants should be handled with the greatest possible confidentiality so that unauthorised people cannot access it. The informant’s real names have also been changed. The second confidential requirement is that the gathered information can only be used for this research purpose.

During this research process, I have been trying to continually be aware of my influence and impact of the thesis outcome. It can be a challenge to position yourself in such a qualitative subjective field of research and at the same time objectively do that. According to Harraway (1988), situated knowledge can be a solution for a somewhat difficult relationship with objectivity. Situated knowledge is a kind of knowledge placed within context whether it is a socio-economic, historic, anthropological, intellectual, or cultural. As mentioned earlier, I have both a personal and a occupation interest in exploring the field of disability. In this part, my epistemological position together with previous experiences concerning disabilities in different situations has affected my choice of a research topic. In one way I do find that my personal interest has been a strength during this writing process. The pre-knowledge and understanding I have from growing up with a sibling who has a comprehensive disability might have helped me in how to formulate the questions to the interview guide and also my ability to analyse the material after. However, it may have affected my ability to be

completely objective at times and able to write academically about it. Harraway (1988) means that no one can never be completely objective since all of our previous experiences shapes our viewpoints but it is necessary to strengthen our self-awareness when performing research.

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With that said, I need to reflect upon my standpoint of growing up as a white, middle-class woman in a privileged Swedish society. Ramazanoglu and Holland (2002) discuss challenges and choices within the feminist methodology. It comes with many thoughts to both consider and be aware of in every research process as a feminist researcher doing qualitative research. The researcher must have a good ability to reflect and develop a self-critical lens over their work. This specific matter of a mother’s perspective concerning her disabled child is something that could be seen as within sensitive research. According to Carroll (2013), the area of sensitive research often examines some topics that might seem more taboo or intrusive. The gendered effect a disability had to have on a mother’s life as well as in her marriage could be classified as a sensitive field of research. It required even further adjustment and thoughts on the researcher’s role and more detailed how you have coped with it.

4.5 Limitations and difficulties

For the time being, three of the mothers’ children are now grown-ups and in their 30s. For that reason, it can be seen as a limitation for this thesis that they have to reflect longer back in time on their personal experiences. One of the reasons why I still chose to have interviews with these mothers is because of the access I had to them through a relative of mine. It was also interesting to have a perspective from the mothers before the law of assistance came in force. Further on, since this is a sensitive topic it could have been much more difficult for mothers with smaller children to be able to reflect upon these issues while firstly: the diagnoses might not have been established, secondly, certain life-changing questions have been more difficult to reflect upon concerning the future. By choosing these mothers whose children are almost or already grown-up I could access both the perspective when the child was growing up and capture reflections that they still deal with today. A few times during the interviews it was necessary to ask a more explaining follow-up question, it was difficult to have the objective balance of explaining but at the same time not guide their answers.

5. Results

To organise the structure of the result it has been necessary to divide the two main themes with subcategories. The first main theme is the everyday life through a gender equality perspective and the second main theme is gender equality and gender roles in the family.

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5.1 Presentation of the mothers

As mention earlier in section 4, the informant’s names have been anonymized.

1. Anna is born in the 1950s. She has lived together and was married until 2012 when her husband passed away. They have two daughters together. The first daughter has the diagnosis of cerebral pares since birth. She started her own hairdressing company within the family. Both of the parents also worked as care assistance to the child after the law of assistance came. She needed to go in early retirement and is not working today.

2. Norah is born in the 1950s. She still lives with her spouse. They have three sons. Their first-born has cerebral pares since birth. She worked until the first child was 10 years old, then she stayed home. She went on to work as a care assistant to her child and supervisor for other care assistants a few years after the law of assistance came. 3. Lena is born in the 1950s. She is married and lives together with her husband. They

have three daughters. The first daughter was diagnosed with Rett’s syndrome after a few years. She worked until the first child was 6,5 and was then home for 10 years. Now still work 50-60 % as a care assistant to her child and supervisor for other assistants.

4. Emma is born in the 1970s. She is living together and is married to the father. They have has one son and one daughter. The second child, the daughter was diagnosed with Autism after a few years. She has worked part-time/full time since the child started nursery. She has 2 years of computer system knowledge as well when taking a break from teaching. Now she works full-time as a teacher.

5.2. The everyday life through a gender equality perspective

The first part of the main theme in discussions about the mother’s experiences of balancing work in their family and the extensive care of the child and how the division of that certain care between them and the child’s father was divided. The importance of having social contacts and support from people in similar situations was also revealed.

5.2.1 The uncertainty of receiving the right help

During the first couple of years, all the mother expresses that there was an overshadow worry concerning lack of knowledge of their child’s condition and how it would develop. By not knowing

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what effects the child’s disability would have was incredibly stressful. A denial phase can be quite common to cope with the stress for a person. That mother said:

Let’s see here, how I remember how it was when she came and everything with her disability, it was, how can I express myself, I didn’t understand what had happened, it was pretty, well it was chaos. It was just, what happened, it was question marks, exclamation marks, I didn’t want to take it in, of course, we just lived on like it hadn’t happened (Anna).

Another mother describes the struggle of handling countless phone calls while caring around on her child who wanted to do so much but could not do it on his own. She describes that she remembers the first couple of years as very tiring and intense. Comparably, this mother expresses that constant fight about handling just the practical aspects of it when having a child with a physical disability. It was many practical situations do end up in, things that are not adjusted for someone who was in a big wheel carriage before she got a wheelchair Moreover, the questioning from others about her child’s needs and her ability to do things, can be very exhausting.

Then, very challenging has been all the people around you that had thoughts, I mean that doesn’t help anyone, in my opinion,

diminished her importance in some way and she has such a big importance in our lives. And then it has of course been very tough with all the contacts, and that just continues. A psychiatric therapist said one time when I ask, what can I do to help my child? She said, “it’s enough that you are just a parent. And I said “It’s definitely not enough to be just a parent (Lena)

Emma agrees on that part and says that an everyday challenge is their need to fight for the right help for their daughter in the school. She found it tragic in the way parents need to fight, argue, and work for their daughter extra needed resources in school. She continues by saying:

My husband and I used to say that, it’s very good that we both have an academic degree both of us otherwise we wouldn’t manage this, but what do you do if not, it is so damn hard to fight with this bureaucratic system […] What do they do who doesn’t work within the school? You can say that you don’t get the help if don’t fight for it. About gender equality, there are so many factors to consider,

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When having a child with special needs it requires extra work for the child’s right to receive helpful equipment. This mother expresses the ongoing process of dealing with league issues to fight for, fix and organise so that the child would get the needed help in everything from helping tools to house

adjustments, to be knowledgeable about the laws. She highlights that she learned pretty quickly that it was not something that came on a silver tray and to realise that was extremely hard.

It could be flow on some things, it was very individual how much help you could get, depending who you came in contact with, but that it was so much to take in and learn, there were at times so much mess and confusion, that you didn’t understand before you got a disabled child. To find out about all of your rights so that he would get a good life so to say or fight for his life all the time (Norah)

5.2.2. Balancing work and home in terms of caring for the child

When discussing the balance between work and the life at home in terms of caring for the child’s needs, this mother says that her continuous worry about her child followed her at her work as a hairdresser. An example of how the extensive worry over the child also overshadowed this mother’s ability to work at times. Anna said that it was tough since as a mother you are always thinking about your child even during work hours. She describes it as difficult to let go of those thoughts and be professional that there were so many emotions that eventually just became like a mess. Further on, there was also a balance that just did not work according to Norah. After some time, she couldn't combine that kind of comprehensive care the child needed and still be work on time. Her job as a teacher required her to be on a certain time every day while her husband did have some additional flexible work hours in his occupation.

I quit working because it wasn’t possible to hold it together to both works and, it was impossible in my situation, it was always someone, my husband had some flexible workhours which luckily was the case because I couldn’t do that when the school started so it really didn’t go any way to keep it together. So that balance wasn’t possible to maintain, someone almost has to be home for it to work (Norah)

Lena had a similar situation where her husband had flexible work hours but at the same time, he had worked on weekends as well in his occupation as a priest. She took a leave of absence from her work as a preschool teacher for 10 years and because of that, it was a natural division that she took

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more of the responsibility in the home. She describes that the time before it was a balance between work and home for her the first couple of years. Then she took a leave of absence from work for 10 years. During those 10 years, she was the one who took a bigger part of the practical responsibility with the argument that she was the one who was home. In this case, it was also the mother who stayed home for a certain time. She explains it in some way that the reason for that was the kind of profession that her husband had. In their situation, it was the most suited options that she took time off from her work as a preschool teacher.

It was me who has taken a big part of the practical responsibility, especially those 10 years when I was at home because I was home and he worked, but he has suffered from constant bad conscience over that because I did take the bigger responsibility duty. So, he has worked many weekends as a priest, so during those years he had a supervisory function in his profession as well, so he had a lot. But, my father was also a priest, so I knew what that meant

(Lena)

Emma said that she feels it is a bit different now from how it has been. Her husband worked very much when the children were small.

It’s not that we always talked about me, working fewer hours, then you get to economic aspects and situations where you feel that you need to work this much, so most people might say “ blame it on yourself, you could have lived in an apartment instead. […] I

actually took a break from teaching and wanted to do something else, I was a bit tired of teaching then. I read two years of computer

system knowledge at the university but then the IT-crash happened, all the big companies had to lay off people. I continue to study for a while, wrote a thesis but then I felt, I cannot afford that. So, I started looking for teaching jobs again because I felt that I needed to work (Emma)

All the mothers have highlighted the difficulties of balancing their work and the demands of the care of their children, in a sense more extensive necessary care of caring for a child with special needs too. In their perspective, the division between them and their husbands of who stayed more in the home, it was a natural sort of outcome for them to do that. For that reason, when

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on, to have a child is always a worry about its safety and health. In addition to having a child with a severe disability, it causes another dimension of worrying.

5.2.3 Importance of social network

It is a unique and different life to have a child with special and more comprehensive care than other children. It affects not only the child itself and the family members, yet the relationships with other people outside the family. Concerning the social contacts and support from friends in such a particular situation as this, the mother does say that there has been a battle to keep some friends to cope with this kind of life at the same time. For all of the mothers, it has been difficult to combine the social life to that distinct they might have wanted or had the opportunity to do during different circumstances. Many friends disappeared there in the beginning for reasons like they could not cope with or had the energy for that kind of life. Emma explains her

disappointment in some people’s treatment. “The interesting thing here is in my opinion is that other parents have a norm how it supposed to be. And that probably is my big sorrow in life, that the children would stop being mean I’m sure of that if they had tolerated parents. We have a few wonderful parents who saw her and accepted her. While others, she doesn’t fit the norm”

Another mother describes her experiences in the following way:

The first friends that I have still hold on to, it has been challenged even there because if you live with a disabled child when whatever and whenever can happen, to have a daughter with such a severe disability it is a lot occupies one´s time, the awake hours, you need to get away and find yourself and the life you had before, it is not easy (Anna)

This mother says that in all of this some friends has been valuable. At first, all the social contacts with friends might not have been affected that much but as times go, you get more limited since they could not come along and do the same things with other the other families.

You do become like the odd bird among other children who are running around then eventually contacts thins out. You can’t come along and do things in the same way as with healthy children. […] Because they don’t get independent in that sense, they never grow up really even if you would have an assistant who works with the child, coming home there’s someone who can’t take care of themselves, all the time (Norah)

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Something that all the mothers mention is extremely appreciated and well-needed when having a child with some sort of disability is to have contact with others who can relate to their

circumstances. Lena said “We had had or have some close friends and they have followed us always. I was with when starting the specific organisation of the diagnosis here in Sweden so that people that I met there, they have been real and thanks to my dedication there I have been near to the expertise. So many questions and information that you don’t find out otherwise” Through that organisation she has found both support and valuable knowledge about her daughters’ diagnoses.

5.3 Gender equality and gender roles in the family

The following section firstly presents the mothers' general thoughts and opinions about the concepts of gender equality. To understand how the resonate about their individual preferences and expectations about this in their own lives, it felt relevant to get their broadly view on this. For most of them, it was hard to speak about the subject in an outside perspective what it means.

5.3.1. General viewpoints and personal perspectives

One mother said “How to answer that, well I guess it gets to be the woman who maybe does most of it all anyway at home, the husband has to work and earn money” Another mother defines it as it has to do with a person’s opportunities in life. “And I think, equality is about that no one should be prevented from doing what it wants to do or can do” While this mother from the first quote describes it as possible to see gender equality through a perspective of two different worlds and from several aspects.

It’s such a big concept, oh, it’s a lot! I think equal in terms of household’s chores but then I can think in broader terms, but if we stick to the little world then I do think that you do an equal amount of work, ah it's hard. I do think that you come together and help each other out within the family if we are staying in this smaller world (Norah)

When reflecting on the concept in general terms, the next mother mention what she believes is a might be a common opinion in terms of a heterosexual relationship regardless of a disability among the children or not.

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equality. Today about gender equality, it might be so that, he has the fun parts […] but if it’s more or less because of the disability, I don’tknow (Emma)

After proceeding more deeply into their perspective of gender equality in their households Norah says when living this kind of life, it is more difficult to reach equality since it requires significantly more than a family without disabilities. Although it was not discussed that much, they were

assigned certain roles anyway and she felt that they never really had time to reflect upon.

Seen through an equality aspect, you are not a “normal” family I would say, oh it's extremely hard because if you would have been completely equal, well it might have been possible if everyone could work part-times jobs […] but it’s not always an option so it depends what kind of jobs you have and it became, the economic aspects, there are many aspects to consider” (Norah)

The mother continues to reflect on an even greater challenge if both the parents would have two extremely demanding jobs with no regulated workhours. “It’s hard the part about gender equality and equal terms, you don’t think about that much or you can but not really to discuss around it […] can’t really hide the facts it’s really hard to give any advice, you just have to look from every individual family who, yeah if its two careerists it must be very difficult” On top of that not having a strong social network around them and she says that it is not just the part with help assistance in the home, it would not have solved everything since as mentioned earlier “there are all these other contacts with all the different authorities, it’s on you to do all that kind of stuff anyway”.

When reflected about if there were specific expected roles as a wife and mother, this mother says that she has not thought about that it that kind of way. We, my husband and I have not discussed gender or feminism, we have helped each other so much and never thought that “I shouldn’t do that because I am a woman and that he wouldn’t do because he is a man”.

What I have thought about might have been that my husband always had to come second. It has been, the focus on the children, that the child with a disability got her needs and the other sisters got there needs and as said not suffer from that the first daughter takes more time to take care of and to make that happen you turn inside out on yourself to be enough (Lena)

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5.3.2 Argument for the division in the home

While discussing the division of chores concerning the child’s needs, the mothers express that there has been an overall necessary division between themselves and the fathers. It is emphasised that they needed to help each other out to make everything to carry on in their daily life. Anna experienced it as they have always divided the chores. She felt that in their situation it was a shared responsibility to getting it all together.

Alone no one is strong but two, are you two so you become strong together so to say, you help each other in that situation If the child didn’t have a disability, then everything would have been a lot easier. But it worked that too. In some way, to manage this and to survive the day and try to make it as (Anna)

All of the mothers say that someone between the parents needed to take the bigger responsibility in terms of division of care of the child. One mother said, “of course you can divide it but it’s hard, I often think that you have to because it is so complexed. But I don’t know if it’s easier these days if it is discussed more generally, that it's more obvious that the father stays home but I’m not sure about that. I don’t know”. She believes it might be more or less easy with different kind of jobs. “You can probably not hide the fact that some jobs really expect it, it might be easier to divide when having some jobs than others if you say so. In some cases, you might not can because then you might lose your job, so that’s how it is” One mother highlights some difficulties she has faced when someone asked about her work-situation:

I can’t say, or I didn’t feel like it was a sacrifice but sure it was when looking at it differently. You feel like that, oh no job when someone asked “what do you do?” well I take care of my disabled child, it’s not that fun, it might feel “oh at home” Sure it was both, it was good in some situations but sad anyway. It’s a double experience, but it was badly forced (Norah)

Further on into their perspective of gender equality in their households, the same mother says that her husband thinks he was by principal pretty equal even before they moved in together. Although it was not discussed that much she demonstrates and says that they gained certain roles anyway and that effects of it were not something they had the time to reflect upon on a deeper level.

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on more flexible hours and also work a bit on the weekends but I might have done a bigger sacrifice than he had to do. Otherwise, it wouldn’t have worked. I don’t think he would have wanted to do that, so of course, it wasn’t that equal (Norah)

The next mother describes the differences in their family situation “With another child you might get advice and guidance, but when a child has a disability you always need to be one step ahead and do everything they can’t, that’s how it gets. […] We got the decision of assistance right after the law came in 1994, suddenly we could be working as assistants for her instead of staying home from our work and so on. You can’t be at work when having a child with those sorts of needs. Hard to combine, but it did mostly work because we had our own company so we got it but the costumers had to suffer because we might not be able to take that booking because it was sickness among the child’s assistants and we had to step in”

Concerning career opportunities and her profession, this mother highlights one complicated relationship in her role as an assistant to her daughter.

And then, it depends on how to look at my work as a personal care assistant, because I mean, I have gone many courses regarding my work as an assistant and my work as a supervisor for other

assistants. It depends, it gets a bit divided for me how to look at that kind of career, because that is a career I wish I didn’t have to have (Lena)

The youngest mother said that she took a great deal of responsibility in the daily life with the activities concerning the children” it has been so important to me that the children participate in different activities, and most of the things for our daughter has not worked then. So, it was me who took the initiative to call for a follow-up and stuff like that. Then when we got to the point that one parent could be in the water to at the swimming classes, he has been there as much as I have, he has been so good about that, but it’s mostly me who has while the children were small, I and my daughter followed the son to his activities and so on.” She continues to talk about reasons for that certain division.

The everyday stuff I have taken great responsibility for and think my husband would have said that too, then also, it wasn’t really a choice, he wasn’t home until quite late, he had a pretty long commute from work during a long time. On the other hand, he has always been amazing at reading for the children, he is so good in

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that sense. Always been that. And on the weekends we were together and did things together with the whole family (Emma) 5.3.3 Differences in handling practical and emotional responsibilities

Lena said that regardless when having a child into this world, it is necessary to take responsibility for them and do all you can for them. It is a true emotional responsibility to receive a child, you need to take that responsibility for the actions. She mentions the importance of not being judgemental from an outside perspective and says “These are families who do their very best, and that might be right for that family in that situation might not be right for another. It is important too, that you get to do that feels best for yours”

And also, a great worry about the future even if you don’t think about that all the time, I definitely don’t worry all the time, but the is a ground of worrying, how it’s going to be? It’s also about that concern, what happens when I’m not there? It’s going to work I know what, but you don’t want that your children will get the life that you had to have (Lena)

In terms of handling uncertainty about the future in different ways, Emma says that she and her husband’s solution is to try to just make the best of it every day and every week. And then they have stopped to argue about what will happen when she is all-grown-up. Because they can’t decide what is going to happen and can’t solve those problems. She does not know if they are just closing their ears and trying to pretend that it does not exist, or if it is a survival thing. She

continues by saying:

About the equality aspects, my husband has been really good to make all the phone calls, all of that bureaucratic stuff. Because I did that one time and then, never again. It thought that the response was just awful, there was no understanding when talking about people, my husband it's very, he put his emotion on the side, he can be very concrete, and can deal with it, And that he has taken the responsibility for. I can’t do that (Emma)

When relating to differences in handling emotions, Anna says “the women by nature have a more tendency to worry and perhaps something even in an unnecessary way and not celebrate before, or that you plan that now something will happen and start to dwell and worry while the man is about

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Norah answer that she and the father both took care of that, but she did take some more of the practical shores. The father did plenty of the necessary different writing part to authorities which made him a great part of it all.

There are so many odd things that need to be handled. I was much more engaged with help associations, organisations for families with similar situations, so I did that but he also had a job, it’s that part with the job too, he had to a lot of things on his workplace, it might have been easier to adjust my job, I took the greater responsibility in total, but I might not have experienced it that way (Norah)

All of the mothers' highlight that it was a puzzle to make everyday life go around. Therefore, it was not much of discussion about gender equality specificity, it was more just a practical mission to figure it out, day by day.

In that case, I’m more of a doer, he might think it was more difficult often, I was more hands-on, do things, and move on. I don’t sit and bury me down totally but rather do things instead and find the information I need, or I might break down and then moves on the sort of. I can’t say that I would just break down and won’t be able to do anything (Norah)

This mother describes that there was a clear division of most of the necessary chores around the child between her and her husband especially during those 10 years when she was home. Simply because she was the one who was home, and he worked.

He has suffered from a constant bad conscience over that because I did take the greater responsibility. So, he has worked many

weekends as a priest, so during those years he had a supervisory function in his profession as well, so he had a lot. But, my father was also a priest, so I knew what that meant (Lena)

Regarding her husband bad conscience, she explains by saying that their differences in personalities as well as in their professions might have affected these assigned roles, subconsciously. “And that has been, I don’t think he should have that, but it is still hard since I have been so engaged in terms diagnosis’s organisation and with the assistance and yeah, it’s not easy. Even though we discuss a lot but I’m the one who acts”. Changes and adjustment have been required during the special

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around, not just as parents, siblings, and grandparents, many that get affected by this of course. Maybe if reflecting with the baggage I have of what I could have done differently, you have to think about yourself and demand more from the surroundings, delegate, make sure to get a bit more time for you, because you do get burn-out when living this kind of life”. The same mother describes the effects of worrying over her child.

You don’t understand when its on-going but it is after that

everything has run up to you, you are not really whole anywhere, it but it’s hard, I might not be the right person to handle that, delegate things because I wanted to do that myself it was my child, I think that usually happens to the moms, hard to let go, you want to be there and steer and have control. And it makes you, in some way, you fall, you can’t in the long run but yeah you do it anyway […] it’s like you’re grown together like Siamese twins with your child” (Anna)

The youngest mother continues by saying “my husband is like that: now we have a problem, we must solve it, and where there is no solution and not knowing where the goal is […] I think that we handle things like that in different ways, also emotionally. He can’t sleep sometimes, and he started to think, then one week later, I’m the one who can’t sleep, the worriedness, that’s how it is

sometimes, and you can’t do anything about that” She concludes by saying the following quote and describes her view through the bigger picture.

We have taken this situation very differently, this situation with our daughter […] But I think we have landed in that we both want the best and try to find the way there sometimes you need to dig yourself in the grown and wallow but, you do things and then, the only important thing is that they have a good life based on their abilities and be as happy as possible. She is very happy and that is our wish that she will continue to be so (Emma)

6. Analysis and discussion

In this part, a thematic analysis of the results will be presented. The themes that have emerged from the interviews with these four mothers have developed from the most frequently

appeared aspect, perspectives, and thoughts. 6.1 The themes

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- Mother’s caring affection for the child

A mother’s responsibility is to take care of her child no matter what, but other aspects, regarding extensive care, is required for mothers that have children with comprehensive special needs. Those aspects are important to highlight and look deeper into. Two examples are emotional and social effects and how they affect the whole family. Through the core theme, two main themes have been developed. The first main theme was:

- The everyday life through a gender equality perspective

The first part of the result circled the information that was discussed about daily life in their families. It was reflections concerning information uncertainty, balancing work and the care of the child and the importance of having a social network. The second main theme was:

- Gender equality and gender roles in the family

The latter part of the result processed more deeply into the mothers' experiences about their

family’s division. It was discussions regarding the mothers first general and then the more personal perspective of gender equality in their family situation, the argument for that certain division and differences in handing practical and emotional responsibilities.

Since these two main themes were comprehensive in terms of information, it was necessary to divide it into smaller subcategories through the result. Through these subcategories, another three subthemes appeared. These subthemes were:

- A constant fight to receive the right help

- Emotional labour and division of responsibilities - Emotional identity shift

On the next page, table 2 shows a summary matrix of the thematic analysis for this study. The information was developed through the process of data material. In that process, crucial and recurring viewpoints from the informants were discussed and highlighted.

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Informants A constant fight to

receive the right help Emotional labor anddivision of responsibilities

Emotional identity shift

Anna

- Has a now

grown-up daughter with cerebral pares

“It was just, what happened, it was question marks, exclamation marks” “with another child, you might get advice and guidance, but when a child has a disability you always need to be one step ahead”

“we were just surviving sometimes”

“alone no one is strong but two, are you two so you become strong together so to say, you help each other in that situation”

”it’s like you’re grown together like Siamese twins with your child”

“I might not be the right person to handle that, delegate things, I think that usually

happens to the mom's”

Norah

- Has a now

grown-up son with cerebral pares

“to find out about all of your rights so that he would get a good life so to say or fight for his life all the time”

“I’m more of a doer I would say, he might think it was more

difficult often”

“I might break down and then moves on

the sort of. I can’t say that I would just break down and won’t be able to do anything”

“I don’t think it was discussed all the time either. I took the greater responsibility in total, but I might not have experienced it that way”

“I was probably the most adjustable of us” it didn’t feel like it was a sacrifice but sure it was when looking at it differently. Lena - Has a now grown-up daughter with Rett’s syndrome

“it has of course been very tough with all the contacts, and that just continues”

“it’s enough that you are just a parent. And I said “It’s definitely not enough to be just a parent”

“he has suffered from a constant bad conscience over that because I did take the greater responsibility” “differences in personalities as well as in our

professions might have affected these assigned roles,

subconsciously”

“a great worry about the future, a ground of worrying, what happens when I’m not there?”

Emma

-Has a teenage daughter with Autism

“good that we both have an academic degree both of us otherwise we wouldn’t manage this. It is so damn hard to fight with this bureaucratic system”

“he put his emotion on the side, he can be very concrete, and can deal with it”

“it’s not that we always talked about me, working

“we have taken this situation very different”

”Who has the time to discuss gender equality in that chaos?” : - Mothers perspectives about gender equality when having a child with special needs