Neither gender studies nor disability research/disability studies have explored gender to a great extent, especially in relation to disabled men or disabled women. In this article we reflect upon the issue of gender in relation to experiences of mental distress by drawing explicitly on some powerful narratives. Those narratives are argued to show the gendered character of disability and resistance; and display that the social forces and processes that construct and give shape to disability and gender are closely intermeshed. We argue that the gendered character of disablism and resistance should be further studies in the light of the new theoretical development that has been created, because gender matters.
Neither gender studies nor disability research/disability studies have explored gender to a great extent in relation to disabled men (Barron 2004; Robertson & Smith 2014; Traustadóttir & Kristiansen 2004; Shakespeare 1996). However, there are exceptions. For example, Noam Ostrander has studied gender in relation to disabled men (2008a, 2008b). Most of the literature which has studied the intersection of disability and gender has explored disabled women’s lives and experiences, and many of the writers and scholars are disabled women themselves (Hall 2011; Morris 1996; Thomas 2006; Traustadóttir & Kristiansen 2004; Wendell 1996). Disabled men’s experiences are often taken as representative of all persons’ experiences in disability studies research, i.e., there is gender blindness. However, men’s actual experiences are rarely researched in disability studies/disability research (Robertson & Smith 2014) but there are, as mentioned above, exceptions (Noam Ostrander 2008a, 2008b). Thus, in general, in research about disability, the man is often the Norm, and social constructions about men and masculinity are not studied and analyzed to a greater extent (Barron 2004). Thus, according to Thomas, ‘…more sustained analyses of the social and gendered character of disability and impairment – both culturally and materially – is required’ (2006: 183). The aim of this article is to share some thoughts about the issue of gender in relation to experiences of mental distress by drawing explicitly on some powerful narratives made by women and men collected by the first author of this article. Hopefully will those reflections on the gendered character of disability and resistance illuminate that the social forces and processes that construct and give shape to disability and gender are closely intermeshed (Thomas 2006), and needs to be acknowledged to a greater extent in research.
During the 1980s, gender categories such as ‘woman’ were deconstructed by feminist scholars into fragmentary identities, then within postmodernism/poststructuralism, ‘identities’ were rejected altogether (New, 2005). However, this poststructuralist approach to identities makes us uneasy; there is a lack of any kind of strategy for structural change. We believe that critical realism, which is a sophisticated and nuanced version of realism, offers a way forward when it comes to understanding and theorizing gender (New 2005). According to New, sexual difference is real and salient; however, these differences are tendencies. Human beings are almost all sexually dimorphic, female and male. Sexual difference can be understood in many different ways, but bodies are only malleable up to a point. According to New, there is thus, a fundamental biological base to sexual difference (Gunnarsson 2011). Furthermore, New contends that the sex-gender distinction recognizes the stratification of reality. Sexual difference is a ‘basic’ lower level mechanism which contributes to the development of gender orders at a higher level. However, gender orders cannot be read off from sexual difference. Sexual difference is a background mechanism among many other mechanisms which are co-acting to produce the gender order. Thus, mechanisms at different levels exist simultaneously and they interact with one another in a non-additive way and affect each other (New 2005). Gender according to New refers thus:
…to the social representations of sexual difference: the beliefs, values and expectations attached to sex categories, and the social relations and ordered practices which they legitimate (New 2005: 64).
As New sums it up:
…sex is ontologically prior to gender, and is one of the many mechanisms the workings of which shape gender orders. Gender is necessarily linked to sex, but not in the sense that it expresses sex, or is reducible to sex, or is determined by sex. Gender is linked to sex because sex is its referent and its basis, the powers and properties which gender ideas and gender orders make meaningful (New 2005: 65).
In line with the critical realist understanding of sex and gender outlined above, we do not believe that it is essentialist or homogenizing to use categories like ‘women’ and ‘men’. The category of, for example, ‘women’ does not reflect the whole reality of concrete and particular women. However, it still refers to something real; for example, the structural position as woman, whether women wish it or not. However, men or women’s actions and experiences are not determined or reducible to the tendencies that are inherent in their structural positions (Gunnarsson 2011).
During the 1980s a number of important works were published that focused on disabled women’s lived experience. These early publications highlighted that disabled women were often disadvantaged in relation to both disabled men and non-disabled women (Bê 2012). During the 1990s more studies appeared by disabled feminists who were now ‘…better equipped to theorize dimensions of social life in novel and sophisticated emancipatory ways’ (Bê 2012: 364). For example, in Thomas’ study about the lived experiences of disabled women in the UK, she argues that:
…the forms and impacts of disablism are invariably refracted in some ways through the prism of gendered locations and gender relations, and that whether we are impaired and disabled or not, we all live out lives which are profoundly shaped by the social constructions of gender (Thomas 1999: 85).
To take into account the social ‘difference’ of gender and how disability intersects with gender is of relevance, and thus, we have been inspired by Thomas in this article. How might the intersection of gender and disability be dealt with analytically? A ‘double oppression’ stance, where oppression is seen as additive, is not helpful, according to Thomas. She cites her own work on gendered disablism, where the narratives of the women in her study showed how they ‘…survive, resist, transgress and “fight” disablism’ (1999: 98). Thus, agency needs to be highlighted when analyzing the intersection of gender and disablism. Thomas argues that the intersection of gender and disability could be theorized by using, for example, feminist approaches to ‘difference’ (Thomas 1999). She proposes an understanding of ‘difference’ that is ‘…materialist, or realist, but not biologically or socially reductionist’ (Thomas, 1999: 116). The non-reductionist materialist ontology approach she takes makes her suggest that identity is both socially produced and self-constructed (Thomas 1999). Thomas’ non-reductionist materialist ontology fits in well with our critical realist approach; therefore, her approach of dealing with the intersection of gender and disability has been adopted. Resistance is thus broadly seen as the ‘survival’ of social invalidation (Pilgrim & Rogers 2009). That is, the survival of the invalidation from the psychosocial forces that was the source of mental distress, as well as the survival of the different types of discrimination and oppression from the psychiatric services and/or the wider society (Pilgrim & Rogers 2009). This broad definition of resistance should be viewed in this article in relation to experiences of mental distress, but it could though be called a form of ‘gendered disability resistance’.
A theoretical framework of disability studies as it is outlined by Thomas, (1999, 2007, 2010) was broadly used when approaching experiences of mental distress in this study. Thomas’ has not directly being engaged with and writing about mental distress. However, she proposes and extended social relational definition of disablism that we belief is fruitful in the area of mental distress, and she also allows other socially imposed restrictions, those which operate to shape personal identity, to move more centre-stage in her definition of disablism:
Disablism: refers to the social imposition of avoidable restrictions on the life activities, aspirations and pscycho-emotional wellbeing of people categorized as ‘impaired’ by those deemed ‘normal’. Disablism is social-relational in character and constitutes a form of social oppression in contemporary society – alongside sexism, racism, ageism and homophobia. In addition to being enacted in person-to-person interactions, disablism may manifest itself in institutionalized and other socio-structural forms (Thomas 2010: 37) (Original emphasis).
We do not see impairment as a wholly social construction as some mental health service users do in the service user movements in the UK. We believe that Thomas’ definition of ‘impairment’ offers a way forward when it comes to experiences of mental distress, if the mind can be included as part of the body: ‘impairments’ can be understood to be those variations in the structure, function and workings of bodies which, in Western culture, are medically defined as significant abnormalities or pathologies (Thomas 1999: 8) (Our emphasis). Furthermore, Thomas’ does not view ‘impairment’ as fixed. The human body is: ‘…a social product, as well as a physically changing ‘“biological entity”. Human bodies possess a materiality which exists in a relationship of dynamic interaction with its social and physical environment’ (Thomas 1999: 9). Thus, for Thomas’, ‘impairment’ is biosocial in its conception and not a fixed entity. The human body exists in a dynamic interaction with its social and physical environment. By viewing ‘impairment’ as biosocial, experiences of mental distress can be understood as a response to social factors like traumatization and victimization (Bentall & Fernyhough 2008), in line with some service users understanding of mental distress. Furthermore, a person experiencing mental distress may (according to this perspective) also be able to recover in the sense of becoming ‘symptom free’ and also experiencing fluctuating ‘symptoms’. Thus, we argue that Thomas’ conceptualization of impairment (1999) enables one to pay attention to the varieties of experiences of mental distress and their implications (Jones & Kelly 2015). Although Thomas analytically separates disability and impairment and thus sustains a binary separation in disability studies thinking, she argues that this analytical separation is a useful explanatory device. However, she maintains that this dualism should be used in a discussion where the overriding interest is in the relationship between disability and impairment (Thomas 2014). Disablism and impairment are in real practical social life very often intermeshed (Thomas 1999). By viewing disability and impairment as intermeshed one could argue that Thomas’ adopts a critical realist perspective because she theorizes disability as an interplay between impairment and disablism as critical realist does. According to Bhaskar and Danermark (2006), Thomas advances a critical realist way of understanding disability.
Critical realism has explicitly been put forward as an alternative in understanding disability by Simon Williams (1999). Furthermore, Carol Thomas takes a very similar line in her elaboration of understanding disability, although she does not explicitly use the concept of critical realism (e.g. Thomas, 1999, 2004) (Bhaskar & Danermark 2006: 279).
As mentioned above, we understand experiences of mental distress as a response to problematic life experiences, and we view experiences of mental distress as an internalization and/or acting out of an oppressive or unliveable situation by the service user/survivor and/or as a coping or survival strategy that a service user may be using in order to deal with problematic life situations such as experiences of traumatization and victimization. Thus, experiences of mental distress may represent both a story of ‘survival’ in relation to stressful social experiences and a desperate cry for understanding, compassion and empathy (Tew 2005). However, we are also aware that there are service users who experience being ascribed a diagnosis as a relief from ‘confusion and uncertainty about one’s unusual experiences’ and may view experiences of mental distress from a more biomedical perspective. To conclude, even though we conceptualize experiences of mental distress as an ‘impairment’, we do not view manifestations of mental distress as some ‘unfortunate impairment’, but rather as a reflection of service users/survivors, resourcefulness and ingenuity (Tew 2005).
However, we have also focused on the individual’s internalization of oppression, ‘internalized disablism’. We see internalized oppression – ‘internalized disablism’ – as an internalized effect, affecting the psycho-emotional well-being of people categorized as ‘impaired’ and restricting their life activities. However, ‘internalized disablism’ starts out with social disablism, and then becomes internalized oppression within the individual (Timander, et al. 2015).
We are not going to reflect on the gendered character of impairment in this article, because that was not the aim of our present study. However, we believe that it is very important to study the gendered character of impairment too.
An important aspect of the research process is to formulate a distinct and well-defined research topic, and to construct the sample in relation to the overall purpose of the study. Central to the selection process in this study was to find men and women with experience of long term mental distress in the area of Gothenburg and Oxford. Furthermore, they should have or had experience of a recovery process. The participants were not defined through a medical diagnosis; rather we wanted people to self-define as having had experience of long term mental distress and of a recovery process.
The guiding principle when it comes to the inclusion and exclusion criteria has been purposive sampling. Purposive sampling means to: ‘…identify groups, settings, or individuals that best exhibit the characteristics or phenomena of interest’ (Maxwell 2012: 94). The participants were recruited through mental health service user and traditional mental health organisations in Sweden and the UK. Thus, purposive sampling in locations and organisations of convenience has been the guiding principle, where realities such as time and practical difficulty influenced decisions about what participants to include (Maxwell 2012). As mentioned above, different organisations for mental health service users and traditional mental health organisations in Gothenburg, Sweden, and Oxford, the UK were approached in order to recruit participants. The organisations were contacted by calling them and sending them information about the project, and many organisations were also visited by the first author to inform more about the study. Research participants contacted the first author after listening to a presentation about the study and/or being given a brief poster/hand out material about the study.
The findings presented here are based on qualitative interviews that the first author conducted in Gothenburg, Sweden and Oxford, UK, during the year 2012 to 2013. The first author transcribed the interview recordings verbatim, and also carried out the translation from Swedish to English. The interviews were recorded with the permission by the participants and written informed consent was obtained. However, the informed consent was viewed as an ongoing process, and research participants could withdraw at any time up until publication of results. Each research participant was given a cinema gift card of a value of £20, for each interview. The names of the participants in this presentation have been changed, and personal characteristics have been de-identified. Before the study began, ethical approval from relevant authorities in the UK and Sweden was obtained.
The ‘sample’ of 33 research participants cannot claim to be representative of men and women with experience of long-term mental distress in a statistical sense. However, it is important to note that the findings are based on 17 women and 16 men, whose ages were fairly evenly distributed through the twenties, thirties, forties, fifties and sixties and from a variety of socio-economic, family, and educational background. Furthermore, they all self-defined as having experience of long term mental distress and recovery. A couple of participants had experiences of living in a different country before moving to the UK or Sweden, thus we had some participants who had experienced being in an ethnic minority. When it came to sexual preference one woman openly identified as lesbian. Not many of the participants were in the forefront of the service user movements in England or Sweden and/or political activists in the movements. However, most of the participants were active and non-active members of the mental health service user organisations or traditional mental health organisations in Sweden and England. Thus, this ‘sample’ is quite varied, drawn from a cross-section of men and women in the wider population.
The analytical method used in this study was framework analysis. The framework approach is a matrix-based method. It involves constructing thematic categories into which the data can be coded (Ritchie & Spencer 1994). Unlike some other qualitative methods, it:
…allows themes or concepts identified a priori to be specified as coding categories from the outset, and to be combined with other themes or concepts that emerge de novo by subjecting the data to inductive analysis (Dixon-Woods 2011: 1) (Original emphasis).
The benefit of doing so is that it enables issues and questions identified in advance to be explicitly and systematically considered in the analysis. But it also allows enough flexibility to detect and characterize issues that emerge from the data (Dixon-Woods 2011). This method might be classified as an abductive approach, kind of oscillating between deductive and inductive approaches. This analytical method is an established and rigorous five-stage method for analysing qualitative data. First the researcher must immerse in the data, and making notes of for example recurrent themes and issues. Once the selected material has been reviewed, the researcher returns to the notes, and attempts to identify key issues, concepts and themes. Thus, the analyst sets up a draft thematic framework within which the material can be sifted and sorted (Ritchie & Spencer 1994). In the next stage, the indexing stage, the thematic framework is systematically applied to the data. In stage four the data are summarized in thematic charts and they are devised with headings and subheadings. In the final stage, mapping and interpretation stage, or synthesising the data, the analyst maps, interprets and synthesises the data through reviewing the charted data, comparing themes and subthemes with each other (Ritchie & Spencer 1994). The main themes were created by drawing on earlier research and theories. The subheadings to the main theme were inductively constructed in order to gain as much new data as possible and still be able to be rooted in the original data. The main themes were the following; gendered disablism, and gendered disability resistance. Subcategories to gendered disablism were for example: Not being a ‘good mother’ and not being a ‘proper and able man’. Subcategories to gendered disability resistance were for example feeling like a good mother and feeling understood and validated by others.
According to Thomas the forms and impacts of disablism are refracted in some ways through the prism of gender relations and gendered locations (Thomas 1999). Thus, the women in first authors study gave examples of what could be interpreted as gendered disablism. They spoke about the feeling and thoughts of not being a ‘good mother’. Maria, in her sixties, had been treating her experience of mental distress with tablets, alcohol and food; she gave the following account of losing the custody of her daughter:
Maria: …it is clear that it has to be. They cannot sit there at the community social services and hear that my daughter does not feel well at the nursery. I am maybe also someone that has an understanding that you cannot keep your child under these circumstances. I know that.
Maria agrees with the community social services that she was not ‘fit’ to take care of her child. In her narrative she tells about, being detoxified several times for ‘alcohol dependence’. However, she was detoxified without any follow up support. She did not receive any empowering talk therapy for her experience of mental distress, and was told by the mental health services that the only way is ‘cure’ through anxiety reducing medication, which led to dependence on tablets. Thus, the mental health services medicalized her problems, did not see her in context and did not give her enough support in her life and in relation to her being a mother. It was in these circumstances that she lost the custody of her daughter, and she blames herself solely for losing her custody of her daughter. It was according to her, right that she lost the custody of her child.
Christine, in her sixties, felt guilty for not being a ‘good mother’ because she had experienced mental distress.
Christine: I am talking about it know because I had my children talking about their misery with me. And I think the best part that happened was when one of my daughters, also the middle one, she, she worked. …One day she offered me a holiday weekend away. …Because she knows that I love the countryside. The atmosphere was very good and the environment was really right. …And she brought things that she knows about me out. How I was with them, the children. How I accused them. How I made life difficult. Without accusing me, but she brought it in such a way like a counsellor would do. And for some reason, because of the environment, the circumstance, the circumstance. And everything was so good and normal. My eyes were being open, bit by bit and I could see clearly, where I was wrong. I could see clearly were I judged my children, accused them. Where I was so hard. Where I thought they fought me. That concave mirror, was from my side. She would stand, sit there and comfortable. Not accusing, not raising, and that opened my understanding. I do not, I do not think I have ever cried that much and that guilt of what I put others through. Thinking it was the other person, while it was actually me.
Christine felt that she was not a ‘good mother’ because of her experience of mental distress. Christine had to flee her country and seek asylum for her and her children in England and start a new life. In addition, her husband and her oldest son were killed in the civil war and she has never been allowed to see and visit where they are buried. Thus, it is understandable that Christine responded to these traumatic life experiences by experiencing mental distress. However, Christine felt that she was not a ‘normal’ mother, and she sometimes referred to herself as ‘monster mum’. Arguably she had internalized devaluing beliefs about herself since she experienced mental distress and she was feeling guilty because she felt she was not being able to be a ‘good mother’ because of her experience of mental distress. But when feeling all this ‘gendered inferiority and guilt’ she lost sight of the achievement that she actually had placed her children in safety and started a new life for her and her children in England, without the help of her husband or the rest of her family, or anybody else’s help.
The men also gave examples of gendered disablism, and they talked about the feeling and thought of not being a ‘proper and able man’. Ymmot, in his sixties felt that he was not a ‘man’ when facing a series of complicated life problems and stressful work. He used alcohol to handle the situation, and when the alcohol consumption spiralled out of control and his life situation too he tried to take his life.
Ymmot: I think it was that I completely “stumbled” when I had my last divorce. Because I just went in to the wall. It was too much at work, go through a divorce, and find a new relationship, and then there was another divorce again. At the same time there were problems with my partner’s children and my son got into drugs. And he ended up in jail and in a treatment home, and all this. It was many factors during few years, which, which totally knocked me. …I am the big brother, and I have always been the Big Brother, and have had great positions in my career. And have been travelling around in Sweden and have (mentions his duties) for (mentions a company). …So when everything around me collapsed, then I collapsed too.
Ymmot feels that he was not a ‘proper man’. He felt he could not face and handle his complicated life situation as a man is ‘supposed to do’. Ymmot felt self-contempt and started to increase his usage of alcohol to handle his feelings. His life situation eventually collapsed and he did not seek and/or got any help. The life situation of his led him to try to end his life. This was yet another proof of his ‘failure’ as a ‘proper man’. Thus, hegemonic ideals of how a man should be can be stifling and detrimental to wellbeing. Ymmot did not view his emotional response of being overwhelmed of a very complicated life situation as understandable. He viewed it initially as a ‘failure’. This story could be interpreted as a kind of gendered internalized disablism, and thus gendered disablism.
Alex, in his fifties, spoke also about not feeling as a ‘proper and able man’ when he was not coping and not in control, because of his experience of mental distress.
Alex: I have not recovered to the same person I was before. …Because I am less confident, than I was before. Essentially knowing that you yourself can break down, is a bit alarming. Until then I have always believed that I could cope. …And now I find myself more nervous. I am a more nervous driver. I do not sleep as well, I never slept very well. But I am just less confident than I used to be. …It is, it is a distressing feeling being depressed. …It is also slightly humiliating that you have to depend on other people. …You cannot look after yourself. People had to drive me around. I stopped driving for several months, because I was very nervous over the drugs. I am very self, I have been a very self-contained person. …I find it humiliating to be, not in control of myself.
When experiencing mental distress, Alex felt that he was not coping and not in control any longer, and he was also dependent on others, and that was humiliating. His experience with mental health problems was therefore very distressing for him, because he could not act as a ‘proper man’ should do. Alex felt that though he was experiencing being in recovery, he was not the same person any longer, because he was less confident due to his experience of mental distress. It could be argued that Alex’s experience of mental distress and his feelings of not being in control and coping, was connected to fear of irrationality and him equalizing experience of mental distress with ‘losing one’s senses’ and him viewing his experience of mental distress as a an ‘alien experience’ and not as a deeply human experience. To be a ‘proper man’ one could not break down and ‘lose one’s mind’.
Christopher, in his sixties, also felt like he was not a ‘proper man. He had experienced mental distress a long time, and he had never spoken about his experiences to his children or told anyone else about it. He felt ashamed of his experiences, and one could argue that he felt like an ‘inferior’ person because of experiences of social disablism. Since being abused as a child, Christopher had developed a resilience, which he used to ‘battle’ his experience of mental distress. However, when he ‘failed to battle his experiences’ and he stopped believing in himself his feeling of being ashamed increased. According to Christopher, his main barrier in his recovery process was the feeling of not believing in himself.
Christopher: Being in doubt. …That I would succeed, that I would overcome. Every now and again you get that sort of: “You are not going to do it”. You hear these voices inside you saying, you know: “You are going down, you are sinking” you know. And it is a case of building up one’s reserves and having the strength to fight it off.
Because Christopher felt embarrassed about his experiences and did not tell anyone about them and did not seek support or get help, Christopher’s ‘battle’ with experiences of mental distress was a solitary experience. When he ‘failed’ at battling his experiences of mental health problems on his own, he felt doubtful about his resilience, and being a ‘proper man’ fighting of his problems. According to Christopher, being severely abused as a child could arguably have exacerbated his feelings of not being confident when ‘not being able to cope’. By not seeking or getting support to ‘battle’ on his own, and interpreting his ‘lack of resilience’ as a lack of strength, he decontextualized his experience of trauma and mental distress, and blamed himself for not being able to ‘fight’ as a ‘proper man’.
Some of the participants spoke about experiences that could be labelled as ‘gendered disability resistance’. For example, some of the women spoke about resistance in relation to motherhood. By being a member and working at a service user/survivor organization and feeling valued by her peers and colleagues, Maria started to believe in herself and claimed parenthood and was proud of being a good mother. Maria told the following about feeling and seeing herself as a good mum after she got custody back of her daughter.
Maria: Yes, so. I am proud that I am also working here. And I also managed to do some further education during this time. …That I succeeded despite things that had happened. And I am proud of everything that I have accomplished in relation to my child and all the things that I have managed in my recovery.
Maria lost her custody of her daughter, when she was experiencing mental distress and she was, to her estimation, detoxicated many times without any follow up support or empowering talk therapy, even though she asked for talk therapy. When she eventually regained the custody back of her daughter, she felt proud of what she had achieved in relation to her child, and now she has a very good relationship with her daughter. To have a good relationship with her daughter means a lot to Maria. To claim motherhood/fatherhood and be proud of being a parent, as a person who has experienced mental distress, is truly an act of gendered disability resistance, since people with experience of mental distress can be denied the right to parenthood, or be questioned as being good parents.
Kate Barlow, in her sixties, spoke also about overcoming the feeling of not being a good mother. In the following account she spoke about being able to cope and integrate her traumatic life experiences of two ectopic pregnancies and battling cancer.
Kate Barlow: Well the guilt that did not save my babies from not being born in the wrong place. That, you know, brought up a lot. The bad mother, you know that I was not able to reproduce naturally. Guilt was a quite, you know, there was, anger and guilt were two bedfellows. …But when with the right facilitator, I yelled it all down the toilet. Vomited all and yelled, screamed and shouted my rage at the universe. And I became this bear. …You know, my power, you know, that was my power returning. …Yes, expectations that I would be a good mother. …And of course, and the only way I could be a mother was to learn to accept. I do not mean to passively accept. But to, you know, to integrate. This is what has happened. And this is the case, and what does, you know. What does mother mean to you in the future, Kate? You know, what sort of, you are still a mother. You know, other people might not know you are a mother. But you know, your children just did not get the chance to grow. So, what is your internal mother going to do about that? You know, are you mothering yourself in that loss?
Kate Barlow’s experience of trauma resulted in mental distress, but she learned how to cope and integrate those traumatic life experiences through empowering talk therapy. Initially, she felt guilt and rage, because she was not able to save her babies and ‘reproduce naturally’. She felt like a ‘bad mother’. However, one can argue that, by her acknowledging her rage, the fact that her two children were not able to grow, she integrated her traumatic life experiences and her power returned. She felt empowered. Furthermore, by still seeing herself as a mother, ‘despite losing’ her children she confronted her internalized beliefs about being a ‘bad mother’ and what being a ‘normal mother’ entailed. By so doing, she ‘mothered’ herself, took care of herself, in her grief.
The themes of feeling understood and validated by others were a dominant issue the women talked about. However, it was not a major theme for the men. It was just two men talking about that issue, for example Hribo. In the following lengthy account, he spoke about the importance of feeling understood and validated.
Hribo: I went to a stress handling group. It was CBT-focused stress handling. And the stress handling group helped me a lot, just to visit the group and meet others. …When I came to this group, it helped me a lot to. It felt so good to see the others, and share, and tell them about my experiences… …and so. And then one listened to what they had to say. …And it was during this period. It was not until I started the group therapy, that I could feel that I belonged. That: “Ok”. And that is what human beings are like. But it was a lot of feeling being an outsider. …I needed to be involved in a group, which, which, could understand. A group of people who had been in the same situation, a group where one could find security as well. …And they knew about my experiences. That was very important for the recovery process, to attend to the group therapy.
Hribo did not feel understood by his family, friends or social security authorities. When he visited and attended the stress handling group he could for the first time feel understood and validated. He could talk freely about his experiences and people were not judgmental or unsupportive. Furthermore, he could also listen to other people’s stories about experiences of mental distress, get tips and understand he was not the only one in the world who had experienced mental health problems. According to Hribo, feeling understood and validated by the people in the group was important for him in his recovery. By sharing and being open about his experiences, not feeling ashamed and not feeling as an inferior man who is not up to scratch because he was supposedly ‘irrational’ by experiencing mental distress, he resisted the hegemonic ideal of masculinity. Furthermore, for him, it was important to feel validated and understood by the others. Again, Hribo resisted the norm of what an ‘able’ man is supposed to be. Most of the women in this study spoke about the importance of feeling understood and validated, and by doing so following hegemonic gender norms, and most of the men spoke about the importance of having a meaningful activity in their life in their recovery process, and thereby also following traditional gender norms. Thus, Hribo resisted hegemonic ideals about being an ‘able’, ‘independent’ and a ‘self-sufficient’ man, and felt not ashamed of his experience of mental distress and wanted to be supported and validated.
These powerful narratives reported above showed that the women and the men experienced gendered disablism. For example, the women spoke about not feeling as a ‘good mother’ and the men spoke about not feeling they were a ‘proper and able man’. Arguably, the women and the men might have been affected by social views about gender, which affected their life circumstances in different ways. Those social views about gender are ‘social constructed distinctions’ and through the social interplay we construct how we are perceived, allowed to be and should be as a ‘proper woman’ and as a ‘proper man’ (Barron 2004). Thus, as Thomas argues: ‘…the form and impact of disablism are invariably refracted in some way through the prism of the gendered location and gender relations that pertain in spatial and cultural settings’ (2006: 178). An ‘ableist’ (‘sanist’) and ‘sexist’ culture rendered disability and gender as dominant identifications in the participants’ lives. We argue that the experience of oppression affected the women and the men negatively along emotional and psychological pathways and affected their life activities and life aspirations, and they internalized devaluing beliefs/identities about themselves. They felt they were not ‘proper and able men’ and not ‘good mothers’. However, we also showed that the women and men resisted gendered disablism. Thus, they were not simply recipients of gendered disablism, and agency needs to be highlighted when analysing the intersection of gender and disablism. Rather, they reclaimed and (re)constructed positive identities and they ‘survived’ the experience of social invalidation, albeit, if that meant conforming to gender norms as a ‘good mother’, for example. However, to feel as a ‘good mother’ is really an act of resistance, since women (and men too) with experience of mental distress very often are questioned as parents (Kristiansen, 2004). Furthermore, some men talked about the importance of feeling validated and understood and thereby resisting hegemonic ideals about being an ‘independent, able and self-sufficient’ man. Arguably, when the men and women were feeling part of the community of one’s choice and/or in positive inter-personal contexts, the impetus to challenge dominant ideologies (sexist and ableist) can become bigger (Timander 2015). Whether or not disabled women and men’s own lives follow conventional gender pathways they construct their identities with explicit or implicit reference to dominant ideologies about ‘what it means to be a woman or a man’, in Western contemporary societies. Thus, gender matters.
The men and the women in this study experienced gendered disablism, and internalized negative identitites. An ‘ableist’ (‘sanist’) and ‘sexist’ culture in Western contemporary societies rendered disability and gender as dominant identifications in the participants’ lives. However, the men and the women were not just ‘passive victims’ of oppression, they also transgressed and resisted gendered disablism. Thus, in line with Thomas (2006) we argue that the gendered character of disablism and resistance should be further studied in the light of the new theoretical development that has been developed during the last twenty years, because gender matters. The social forces and processes that construct and give shape to disability and gender are closely intermeshed.
The authors would like to thank all of the participants who agreed to take part in this study – without their willingness and their trust with their stories, this research would not have been possible.
The authors have no competing interests to declare.
Ann-Charlott Timander, PhD. Senior lecturer at the Department of Social Work, Gothenburg University.
Anders Möller, PhD. Emeritus Professor in Public Health at the Department of Social Sciences, Ersta Sköndal University College.
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