Maria J Berghs
Dados Biográficos
| ID | 1726341 |
|---|---|
| NOME | Maria J Berghs |
| PRENOMES | Maria J |
| SOBRENOME | Berghs |
| ASSINATURA | BERGHS M J |
| AFILIAÇÕES | De Montfort University |
| ORCID | 0000-0002-6512-7921 |
| VERIFICADO | Sim |
| TOTAL DE OBRAS | 28 |
| TOTAL DE CITAÇÕES | 77 |
| OBRAS COMO AUTOR | 28 |
| OBRAS COMO EDITOR | 0 |
| PRIMEIRO ANO DE PUBLICAÇÃO | 2010 |
| ANO MAIS RECENTE DE PUBLICAÇÃO | 2026 |
| ÍNDICE H | 5 |
A Racialized Capitalism Perspective on the Work and Employment of Black and Minoritized Ethnic Workers Living With Sickle Cell Disorder
Little is known about the employment experiences of Black minoritized ethnic workers in England with sickle cell disorder (SCD). Using Satnam Virdee's concept of racialized capitalism within the context of a critical discussion of intersectionality, we argue that their experiences are usefully understood as shared occurrences of racism determined by structural conditions across three generations. Drawing on in‐depth interviews with 47 individuals…
Is the workplace about to get better or worse for disabled people in the United Kingdom
The indignities of shielding during the Covid-19 pandemic for people with sickle cell disorders
This article seeks to understand the first-hand experiences of people with sickle cell, a recessively inherited blood disorder, who were identified as clinically extremely vulnerable during the COVID-19 pandemic. Part of a larger sequential mixed-methods study, this article uses a selective sample of eight qualitative semi-structured interviews, which were analysed using interpretative phenomenological analysis (IPA). The first stage of IPA focus…
I want to become someone!” gender, reproduction and the moral career of motherhood for women with sickle cell disorders
In Sierra Leone, motherhood is being transformed into a moral career for women with sickle cell disorders. This qualitative participatory study, conducted in 2018, involved thirty-six semi-structured interviews with female care-givers and women with sickle cell disorders. Mothers argued that medical models of disease, combined with caring practices, are means to morally manage ideas of 'spoiled identity' and rethink the sick role, disability and …
Representing disabling experiences
Interventions that promote public health have the potential to transform lives, particularly for those who experience disability, where marked social and material inequalities occur across the life‐course. When evaluating such interventions, health‐related quality‐of‐life is regarded as a primary outcome and used to inform evidence‐based practice. Quality‐of‐life measures, however, are not straightforward heuristic devices but express technologie…
Let's Get Back to Normal? Covid-19 and the Logic of Cure
The COVID-19 pandemic has inversed certainties of absolutes of cure in everyday life but paradoxically this has occurred during a time when novel scientific advancements seem to herald a new frontier of cures for rare diseases, chronic conditions, disabilities and viruses that were previously incurable. In this paper, I illustrate the development of a logic of cure by first of all noting a lacuna in the medical sociological and anthropological li…
An African Path to Disability Justice
Who Gets Cured? Covid-19 and Developing a Critical Medical Sociology and Anthropology of Cure
The race for a vaccine for the SARS-CoV-2 virus that causes COVID-19 illustrates the urgency to find a cure during a pandemic but also deep anxieties as we realise, we have to leave behind our absolutes of 'cure'. Just as our understandings of COVID-19 are marked by social understandings of inequalities in infection, environment, prevention and intervention (Trout & Kleinman 2020, Lupton & Willis 2020, these new understandings of cure should be s…
On the possibility of a disabled life in capitalist ruins
The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person's disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The re…
Time to apply a social determinants of health lens to addressing sickle cell disorders in sub-Saharan Africa
Sickle cell disorders are a complex multisystem inherited genetic blood disorders that affect millions of people worldwide and complications of the disorders can include anaemia, pain episodes and organ damage. Medical advances, early detection, intervention in infancy and specialised care across the life-course are transforming these genetic blood disorders into chronic conditions, with longer life expectancies and better quality of life, yet pu…
Intersectionality and employment in the United Kingdom
This paper begins by giving a description of the relationship between austerity and the neoliberal policy focus on work in the UK, and how this impacts negatively on disabled people. It examines why Black disabled people’s employment experiences have been missing in the literature despite the fact that they are more affected by austerity. Black disabled people’s experiences in the job market tend to focus on racism and discrimination, whilst othe…
"You have to find a caring man, like your father!" gendering sickle cell and refashioning women's moral boundaries in Sierra Leone
Most research on sickle cell disorders has tended to be gender-blind. This qualitative study undertaken in 2018, explores if and how sickle cell disorders become gendered in Sierra Leone through the analytical framework of a feminist ethics of care. It argues that women have to navigate moral blame when they have children with the condition. At the same time women refashion moral boundaries so that gendered norms around childhood and parenting fo…
Rights to social determinants of flourishing? A paradigm for disability and public health research and policy
We need to understand how disability might have an accumulative impact across the life course, as well as how to ensure equity for people living with disabilities. This means conceptualising a social determinants of flourishing where we evaluate how exactly randomised controlled trials and public health interventions, not only lead to greater equality but also ensure rights to health and wellbeing
Do disabled people need a stronger social model
We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation. We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed in response to such threats to disabled people’s human rights. Disabled peopl…
Public health, research and rights
Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories…
Practices and discourses of ubuntu
Background : Southern African scholars and activists working in disability studies have argued that ubuntu or unhu is a part of their world view. Objectives : Thinking seriously about ubuntu , as a shared collective humanness or social ethics, means to examine how Africans have framed a struggle for this shared humanity in terms of decolonisation and activism. Method : Three examples of applications of ubuntu are given, with two mainly linked to …
Resignifying the sickle cell gene
Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of 'racialised' risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public heal…
Neoliberal policy, chronic corruption and disablement
In this article, I question where ‘disability’ has been in humanitarian discourses and practices linked to the Ebola epidemic. Policy and practice have generally focused on issues linked to biosecurity in relation to West Africa but not on creation of disability linked to breakdown of health systems. Those same discourses of containment and biosocial risks are now being used in relation to people who have survived Ebola but have disabling symptom…
Talk to Me. There’s Two of Us’
Studying kinship has involved doing family, displaying family and ‘displaying family’ as a sensitising concept to understand modalities troublesome to display. Fathers at antenatal screening clinics for sickle cell are faced with pressures to produce multiple displays – of family, illness knowledge, the good father and the model citizen – often in the face of racialised identities. Such fathers emphasise the importance of hypervisibility in gende…
Gun violence, disability & recovery
Rising inequalities have a correlation to increases in destabilisation, conflict and violence. Similarly, the proliferation of small arms and their vested legal and illegal economic, political and
Radicalising ‘disability’ in conflict and post-conflict situations
In this article, a radical social model of disability lens is taken to illustrate what counts as ‘disability’ within a neoliberal mindset. The South African and disabled activist Vic Finkelstein describes both an ‘outside-in approach’ that looks at the material conditions of how ‘disability’ is constructed and an ‘idealist’ ‘inside-out’ approach, or how people describe experiences of inequality and disablement. The ‘outside-in’ approach is where …
Who's the guy in the room?' Involving fathers in antenatal care screening for sickle cell disorders
Native American communities on health and disability
There has been a lot of recent work on decolonising disability studies theoretically and methodologically (Meekosha 2008; Grech 2009; Connell 2011), and indigenous1 disability in particular (Hollin
Limitations of Individualistic Peacebuilding in Postwar Sierra Leone
This paper focuses on two postwar initiatives in Sierra Leone: the Disarmament, Demobilization, and Rein-tegration (DDR) process and the transitional justice process through the Truth and Reconciliation Commission (TRC). The paper examines both processes and points to some of their limitations. It pays special attention to the problems of defining and identifying “perpetrators” and “victims” and the lack of gender and disability mainstreaming in …
Embodiment and Emotion in Sierra Leone
In this article, drawing on in-depth multi-sited ethnographic field research, a description is given of how an ‘amputee and war-wounded’ community formed in Sierra Leone after a 10-year civil war from 1991 to 2002. Through the shared experiences of life in a camp, medical care, participation in the rebuilding of the nation-state, to the ‘managing’ of the everyday structural violence of poverty, people find themselves dealing with new local and gl…
Do disabled people need a stronger social model
We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation. We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed in response to such threats to disabled people’s human rights. Disabled peopl…
Practices and discourses of ubuntu
Background : Southern African scholars and activists working in disability studies have argued that ubuntu or unhu is a part of their world view. Objectives : Thinking seriously about ubuntu , as a shared collective humanness or social ethics, means to examine how Africans have framed a struggle for this shared humanity in terms of decolonisation and activism. Method : Three examples of applications of ubuntu are given, with two mainly linked to …
"You have to find a caring man, like your father!" gendering sickle cell and refashioning women's moral boundaries in Sierra Leone
Most research on sickle cell disorders has tended to be gender-blind. This qualitative study undertaken in 2018, explores if and how sickle cell disorders become gendered in Sierra Leone through the analytical framework of a feminist ethics of care. It argues that women have to navigate moral blame when they have children with the condition. At the same time women refashion moral boundaries so that gendered norms around childhood and parenting fo…
Radicalising ‘disability’ in conflict and post-conflict situations
In this article, a radical social model of disability lens is taken to illustrate what counts as ‘disability’ within a neoliberal mindset. The South African and disabled activist Vic Finkelstein describes both an ‘outside-in approach’ that looks at the material conditions of how ‘disability’ is constructed and an ‘idealist’ ‘inside-out’ approach, or how people describe experiences of inequality and disablement. The ‘outside-in’ approach is where …
Embodiment and Emotion in Sierra Leone
In this article, drawing on in-depth multi-sited ethnographic field research, a description is given of how an ‘amputee and war-wounded’ community formed in Sierra Leone after a 10-year civil war from 1991 to 2002. Through the shared experiences of life in a camp, medical care, participation in the rebuilding of the nation-state, to the ‘managing’ of the everyday structural violence of poverty, people find themselves dealing with new local and gl…
Who's the guy in the room?' Involving fathers in antenatal care screening for sickle cell disorders
On the possibility of a disabled life in capitalist ruins
The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person's disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The re…
Intersectionality and employment in the United Kingdom
This paper begins by giving a description of the relationship between austerity and the neoliberal policy focus on work in the UK, and how this impacts negatively on disabled people. It examines why Black disabled people’s employment experiences have been missing in the literature despite the fact that they are more affected by austerity. Black disabled people’s experiences in the job market tend to focus on racism and discrimination, whilst othe…
Public health, research and rights
Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories…
Talk to Me. There’s Two of Us’
Studying kinship has involved doing family, displaying family and ‘displaying family’ as a sensitising concept to understand modalities troublesome to display. Fathers at antenatal screening clinics for sickle cell are faced with pressures to produce multiple displays – of family, illness knowledge, the good father and the model citizen – often in the face of racialised identities. Such fathers emphasise the importance of hypervisibility in gende…
Who Gets Cured? Covid-19 and Developing a Critical Medical Sociology and Anthropology of Cure
The race for a vaccine for the SARS-CoV-2 virus that causes COVID-19 illustrates the urgency to find a cure during a pandemic but also deep anxieties as we realise, we have to leave behind our absolutes of 'cure'. Just as our understandings of COVID-19 are marked by social understandings of inequalities in infection, environment, prevention and intervention (Trout & Kleinman 2020, Lupton & Willis 2020, these new understandings of cure should be s…
Resignifying the sickle cell gene
Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of 'racialised' risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public heal…
Neoliberal policy, chronic corruption and disablement
In this article, I question where ‘disability’ has been in humanitarian discourses and practices linked to the Ebola epidemic. Policy and practice have generally focused on issues linked to biosecurity in relation to West Africa but not on creation of disability linked to breakdown of health systems. Those same discourses of containment and biosocial risks are now being used in relation to people who have survived Ebola but have disabling symptom…
A Comparative Analysis
In this article, we compare conceptions of disability in Sierra Leone using the theoretical category of victimhood. We show how it intersects with how: 1) traditional perceptions of disability locate a person within a moral economy of blame and social remedies, 2) how disability discourses within a segregated setting are being affected by multiple postconflict ideas around victims and victimization, and 3) how dependency and success are created a…
Coming to terms with inequality and exploitation in an African state
In this article, I describe how during my anthropological research in post‐conflict Sierra Leone with a disabled community, I was confronted by experiences of inequality and exploitation. Many disabled people had previous disabling contact with other researchers, organisations and journalists. Others described difficulties surviving the disabling socio‐economic conditions and were not viewed as 'development' partners, despite the fact that their …
Paying for stories of impairment – parasitic or ethical? Reflections undertaking anthropological research in post-conflict Sierra Leone
This article describes how during ethnographic research in Sierra Leone, I was working with people who were used to telling stories of violence about how they got their impairments, which I perceived as ethically problematic and exploitative. I explain how those stories are becoming linked to a post-conflict culture of dependency, patronage and payment. In this context, I explain some of the ethical limitations and struggles I encountered and why…
Coming to terms with inequality and exploitation in an African state
In this article, I describe how during my anthropological research in post‐conflict Sierra Leone with a disabled community, I was confronted by experiences of inequality and exploitation. Many disabled people had previous disabling contact with other researchers, organisations and journalists. Others described difficulties surviving the disabling socio‐economic conditions and were not viewed as 'development' partners, despite the fact that their …
Embodiment and Emotion in Sierra Leone
In this article, drawing on in-depth multi-sited ethnographic field research, a description is given of how an ‘amputee and war-wounded’ community formed in Sierra Leone after a 10-year civil war from 1991 to 2002. Through the shared experiences of life in a camp, medical care, participation in the rebuilding of the nation-state, to the ‘managing’ of the everyday structural violence of poverty, people find themselves dealing with new local and gl…
A Comparative Analysis
In this article, we compare conceptions of disability in Sierra Leone using the theoretical category of victimhood. We show how it intersects with how: 1) traditional perceptions of disability locate a person within a moral economy of blame and social remedies, 2) how disability discourses within a segregated setting are being affected by multiple postconflict ideas around victims and victimization, and 3) how dependency and success are created a…
Limitations of Individualistic Peacebuilding in Postwar Sierra Leone
This paper focuses on two postwar initiatives in Sierra Leone: the Disarmament, Demobilization, and Rein-tegration (DDR) process and the transitional justice process through the Truth and Reconciliation Commission (TRC). The paper examines both processes and points to some of their limitations. It pays special attention to the problems of defining and identifying “perpetrators” and “victims” and the lack of gender and disability mainstreaming in …
Native American communities on health and disability
There has been a lot of recent work on decolonising disability studies theoretically and methodologically (Meekosha 2008; Grech 2009; Connell 2011), and indigenous1 disability in particular (Hollin
Gun violence, disability & recovery
Rising inequalities have a correlation to increases in destabilisation, conflict and violence. Similarly, the proliferation of small arms and their vested legal and illegal economic, political and
Radicalising ‘disability’ in conflict and post-conflict situations
In this article, a radical social model of disability lens is taken to illustrate what counts as ‘disability’ within a neoliberal mindset. The South African and disabled activist Vic Finkelstein describes both an ‘outside-in approach’ that looks at the material conditions of how ‘disability’ is constructed and an ‘idealist’ ‘inside-out’ approach, or how people describe experiences of inequality and disablement. The ‘outside-in’ approach is where …
Who's the guy in the room?' Involving fathers in antenatal care screening for sickle cell disorders
Neoliberal policy, chronic corruption and disablement
In this article, I question where ‘disability’ has been in humanitarian discourses and practices linked to the Ebola epidemic. Policy and practice have generally focused on issues linked to biosecurity in relation to West Africa but not on creation of disability linked to breakdown of health systems. Those same discourses of containment and biosocial risks are now being used in relation to people who have survived Ebola but have disabling symptom…
Talk to Me. There’s Two of Us’
Studying kinship has involved doing family, displaying family and ‘displaying family’ as a sensitising concept to understand modalities troublesome to display. Fathers at antenatal screening clinics for sickle cell are faced with pressures to produce multiple displays – of family, illness knowledge, the good father and the model citizen – often in the face of racialised identities. Such fathers emphasise the importance of hypervisibility in gende…
Public health, research and rights
Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories…
Practices and discourses of ubuntu
Background : Southern African scholars and activists working in disability studies have argued that ubuntu or unhu is a part of their world view. Objectives : Thinking seriously about ubuntu , as a shared collective humanness or social ethics, means to examine how Africans have framed a struggle for this shared humanity in terms of decolonisation and activism. Method : Three examples of applications of ubuntu are given, with two mainly linked to …
Resignifying the sickle cell gene
Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of 'racialised' risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public heal…
Rights to social determinants of flourishing? A paradigm for disability and public health research and policy
We need to understand how disability might have an accumulative impact across the life course, as well as how to ensure equity for people living with disabilities. This means conceptualising a social determinants of flourishing where we evaluate how exactly randomised controlled trials and public health interventions, not only lead to greater equality but also ensure rights to health and wellbeing
Do disabled people need a stronger social model
We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation. We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed in response to such threats to disabled people’s human rights. Disabled peopl…
Time to apply a social determinants of health lens to addressing sickle cell disorders in sub-Saharan Africa
Sickle cell disorders are a complex multisystem inherited genetic blood disorders that affect millions of people worldwide and complications of the disorders can include anaemia, pain episodes and organ damage. Medical advances, early detection, intervention in infancy and specialised care across the life-course are transforming these genetic blood disorders into chronic conditions, with longer life expectancies and better quality of life, yet pu…
Intersectionality and employment in the United Kingdom
This paper begins by giving a description of the relationship between austerity and the neoliberal policy focus on work in the UK, and how this impacts negatively on disabled people. It examines why Black disabled people’s employment experiences have been missing in the literature despite the fact that they are more affected by austerity. Black disabled people’s experiences in the job market tend to focus on racism and discrimination, whilst othe…
"You have to find a caring man, like your father!" gendering sickle cell and refashioning women's moral boundaries in Sierra Leone
Most research on sickle cell disorders has tended to be gender-blind. This qualitative study undertaken in 2018, explores if and how sickle cell disorders become gendered in Sierra Leone through the analytical framework of a feminist ethics of care. It argues that women have to navigate moral blame when they have children with the condition. At the same time women refashion moral boundaries so that gendered norms around childhood and parenting fo…
Who Gets Cured? Covid-19 and Developing a Critical Medical Sociology and Anthropology of Cure
The race for a vaccine for the SARS-CoV-2 virus that causes COVID-19 illustrates the urgency to find a cure during a pandemic but also deep anxieties as we realise, we have to leave behind our absolutes of 'cure'. Just as our understandings of COVID-19 are marked by social understandings of inequalities in infection, environment, prevention and intervention (Trout & Kleinman 2020, Lupton & Willis 2020, these new understandings of cure should be s…
On the possibility of a disabled life in capitalist ruins
The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person's disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The re…
Let's Get Back to Normal? Covid-19 and the Logic of Cure
The COVID-19 pandemic has inversed certainties of absolutes of cure in everyday life but paradoxically this has occurred during a time when novel scientific advancements seem to herald a new frontier of cures for rare diseases, chronic conditions, disabilities and viruses that were previously incurable. In this paper, I illustrate the development of a logic of cure by first of all noting a lacuna in the medical sociological and anthropological li…
An African Path to Disability Justice
I want to become someone!” gender, reproduction and the moral career of motherhood for women with sickle cell disorders
In Sierra Leone, motherhood is being transformed into a moral career for women with sickle cell disorders. This qualitative participatory study, conducted in 2018, involved thirty-six semi-structured interviews with female care-givers and women with sickle cell disorders. Mothers argued that medical models of disease, combined with caring practices, are means to morally manage ideas of 'spoiled identity' and rethink the sick role, disability and …
Representing disabling experiences
Interventions that promote public health have the potential to transform lives, particularly for those who experience disability, where marked social and material inequalities occur across the life‐course. When evaluating such interventions, health‐related quality‐of‐life is regarded as a primary outcome and used to inform evidence‐based practice. Quality‐of‐life measures, however, are not straightforward heuristic devices but express technologie…
Sociology (22 obras) · Political science (19 obras) · Law (16 obras) · Psychology (16 obras) · Gender Studies (14 obras) · Medicine (14 obras) · Law (13 obras) · Gender Studies (12 obras) · Disability Rights and Representation (10 obras) · Social Psychology (8 obras)