Dr Maria Berghs

Maria Berghs is an anthropologist with a PhD in sociology and social policy. She works in the field of medical anthropology and sociology, specialising in disability studies and chronic illness. Her research interests include disability, chronic illness, global health (sickle cell and thalassaemia), humanitarianism, ethics, sociology and anthropology of cure, gender and West Africa (Sierra Leone). She has published books, numerous chapters, journal articles and commentary pieces. 

She came to De Montfort University to work with Professor Simon Dyson and is continuing his legacy as the Director of the Social Study of Thalassamia and Sickle Cell (TASC) Unit   https://tascunit.com/  They also have social science teaching resources on sickle cell which are reseach informed and free to use.

Our resources are also available at the British Sociological Association (BSA) Acknowledge Repository on ‘race’ and pedagogy, so they can be used in sociology teaching in higher education:  https://www.acknowledge.org.uk/ 

The Unit for the Social Study of Thalassaemia and Sickle Cell (TASC Unit) is associated with the following institute and research centre at DMU:

Institute of Research and Innovation in Social Sciences

Mary Seacole Research Centre

Simmonds, B. A., & Berghs, M. 2024. Editorial: Intersections of ageing and disability during the COVID-19 pandemic. Frontiers in Sociology, 9, 1501580. Frontiers | Editorial: Intersections of ageing and disability during the COVID-19 pandemic

Berghs, M., Horne, F., Yates, S., Kemp, R. & Webster, A. 2024 The indignities of shielding during the COVID-19 pandemic for people with sickle cell: An Interpretive Phenomenological Analysis, Special Issue Intersections of Aging and Disability During the COVID-19 Pandemic: Frontiers in Medical Sociology, 9: doi: 10.3389/fsoc.2024.1334633

Ola, B., Olushola, O., Ebenso, B. & Berghs, M. 2024. Sickle Cell Disorder and Its Psychosocial Burdens in Africa. In Sickle Cell Disease in Sub-Saharan Africa Public Health Perspectives. Bukola, B., Kanayo,K & Inusa, B. (eds.) Sickle Cell Disease in Sub-Saharan Africa | Public Health Perspectives (taylorfrancis.com)

Berghs, M., Ebenso, B. & Ola B. 2024. The Social Determinants of Severity in Sickle Cell. In Sickle Cell Disease in Sub-Saharan Africa Public Health Perspectives. Bukola, B., Kanayo,K & Inusa, B. (eds.) Sickle Cell Disease in Sub-Saharan Africa | Public Health Perspectives (taylorfrancis.com)

Berghs, M. 2024. The Critical Importance of Global Collaboration in Sickle Cell Advocacy and Management. In Sickle Cell Disorders in Sub-Saharan Africa. Bukola, B., Kanayo,K & Inusa, B. (eds.) Sickle Cell Disease in Sub-Saharan Africa | Public Health Perspectives (taylorfrancis.com)

Afeworki Abay, R. & Berghs, M. 2024. Impossible Working Lives and Disabled Bodies during Racialised Capitalism: Perspectives from Germany and the United Kingdom. In Intersectional Colonialities, Embodied Colonial Violence and Practices of Resistance at the Axis of Disability, Race, Indigeneity, Class, and Gender. Afeworki Abay R. & Soldatic, K. (eds.). London: Routledge. Intersectional Colonialities: Embodied Colonial Violence and Practices (routledge.com)

Berghs, M. 2023. Philosophical and practical challenges of Ubuntu: Application to decolonial activism and conceptions of personhood and disability. In: Southern Theories Contemporary and Future Challenges. Mutanga, O. and Marovah,T.  (Eds.), London & New York: Routledge. Southern Theories: Contemporary and Future Challenges - 1st Edition - (routledge.com)

Atkin, K.M., Berghs, M., & Chattoo, S. 2023. Representing Disabling Experiences: Rethinking Quality of Life when Evaluating Public Health Interventions. Politics & Policy, 1-57.  https://doi.org/10.1111/polp.12515

Berghs, M. & Ebenso, B. 2023. Social Science Research & Sickle Cell. In Handbook of Social Sciences and Global Public Health.  Liamputtong, P. (Eds), Cham: Springer. https://link.springer.com/referencework/10.1007/978-3-030-96778-9?page=1#toc

Berghs, M., Horne, F., Yates, S., Graham, S., Kemp, R., Webster, A. & Howson, C. 2022. Black Sickle Cell Patients’ Lives Matter: Healthcare, long- term shielding and psychological distress during a racialized pandemic in England – a mixed-methods study. BMJ Open, http://dx.doi.org/10.1136/bmjopen-2021-057141

Cronin de Chavez, A., Berghs, M., Ola, B. & Ebenso, B. 2022. Is screening for diabetes II among patients with sickle cell trait a potential example of structural racism in healthcare? Hemasphere, 6: 56-57.

Coen-Sanchez, K., Ebenso, B., El-Mowafi, I. M., Berghs, M., Idriss-Wheeler, D., & Yaya, S. 2022. Repercussions of overturning Roe v. Wade for women across systems and beyond borders. Reproductive Health, 19(1), 1-5. https://reproductive-health-journal.biomedcentral.com/articles/10.1186/s12978-022-01490-y

Berghs, M, Dyson, M.A., Gabba, A., Nyandemo, S., Roberts, G., Deen, G. and Thomas, I. 2022. “I want to become someone!” Gender, Reproduction and the Moral Career of Motherhood for Women with Sickle Cell Disorders, Culture, Health and Sexuality, https://doi.org/10.1080/13691058.2022.2083239

Berghs, M. 2022. Let's Get Back to Normal? COVID-19 and the Logic of Cure. Frontiers in Sociology, 7. https://dx.doi.org/10.3389%2Ffsoc.2022.782582

Berghs, M. 2022. An African Path to Disability Justice: Community, Relationships and Obligations: by Oche Onazi, Cham, Springer, 2020, xix+ 179 pp. Canadian Journal of African Studies, 

Berghs, M, Dyson, S.M., Greene, A.M., Atkin, K. and Morrison, V. 2021. ‘They Can Replace You at Any Time!”: (In)Visible Hyper-Ableism, Employment and Sickle Cell Disorders in England, Scandinavian Journal of Disability Research, https://www.sjdr.se/articles/10.16993/sjdr.831/

Dyson, S.M., Atkin, K., Berghs, M., Greene, A.M. 2021. On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England. Social Science & Medicine, 272, 113713

Berghs, M. 2021. Who gets cured? COVID-19 and developing a critical medical sociology and anthropology of cure. Frontiers, https://doi.org/10.3389/fsoc.2020.613548

Berghs, M. 2021. An African ethics of social wellbeing: Understanding Disability and Public Health. In Disability in Africa: Inclusion, Care, and the Ethics of Humanity Falola, T. & Hamel, N. (eds). New York: University of Rochester Press.

Berghs, M. 2021. Caroline Williamson Sinalo, Rwanda After Genocide: gender, identity and post-traumatic growth. Cambridge: Cambridge University Press (pb£ 22.99–978 1 108 44459 0). 2018, xiii+ 219 pp. Africa, 91(2), 338-340.

Berghs, M. & Dyson, S.M. 2020. Intersectionality and Employment in the United Kingdom: Where are all the Black Disabled People? Disability & Society, 1-24.

Berghs, M., Dyson, S.M., Gabba, A., Nyandemo, S.E., Roberts, G., Deen, G. 2020. "You have to find a caring man, like your father!" Gendering sickle cell and refashioning women's moral boundaries in Sierra Leone. Social Science & Medicine, 259, 113-148.

Berghs, M., Ebenso, B., de Chavez, A.C. & Ola, B. 2020. Time to apply a social determinants of health lens to addressing sickle cell disorders in Sub-Saharan Africa. BMJ Global Health, 5:e002601.

Peña-Fernández, A., Anjum, U., Wadoum, R. E. G., Koroma, S., & Berghs, M. 2020. Competing ethics in a pilot strategy to implement parasitology training and research in post-Ebola Sierra Leone. International Health, 12 (6): 509-514.

Berghs, M. 2020. Biosocial Model of Disability. In Encyclopedia of Gerontology and Population Aging, Gu, D. & Dupre, M.E. (eds.) Cham: Springer.

Berghs, M., Morrison, V., Sokhal, K., & Dyson, S. 2019. Sickle Cell, Work and Employment: A Guide for Employers and Employees on Sickle Cell Disorder (SCD). Leicester: De Montfort University.

Berghs, M., Atkin, K., Hatton, C. & Thomas, C.  2019. Rights to Social Determinants of Flourishing: A Paradigm for Disability and Public Health Research and Policy, BMC Public Health, 19: 997.

Cronin de Chavez, A., Atkin, K. Babbington, F., Berghs, M.J., Dyson, S.M.,Miller, A., & Whitelaw D. 2019. Incidental finding of sickle cell trait from an everyday diabetes test – should the general practitioner report? retest? refer? Clinical Diabetes, 38 (1): 101-107.

Berghs, M., Gabba, . E.; Nyandemo, S.E., Dyson,S.M., Deen, G. F. & Roberts, G.T. 2019. "We di woman den, na we di suffer": A Report on Sickle Cell in Sierra Leone. Leicester: De Montfort University.

Berghs, M., Atkin, K., Hatton, C. & Thomas, C. 2019.Current Issues: Do disabled people need a stronger social model - a social model of human rights. Disability & Society, 1-6.

Berghs, M., Chataika, T., El-Lahib, Y. & Dube, A.K. (eds.). 2019. The Routledge Handbook of Disability Activism. London and New York: Routledge. (2019 Taylor & Francis Award for Most Outstanding Social Science Handbook https://bit.ly/2zWZb7c)

Berghs, M., Atkin, K., Hatton, C. & Thomas, C. 2019. Policy Briefing: Implementing empirical ethics and rights - IDEAS for ensuring disability equity in research. York: University of York.

Dyson, S. M. & Berghs, M. 2019. Ethnicity, Disability and Chronic Illness. Understanding ‘race’ and ethnicity, Chattoo, S., Atkin, K., Graig, G. & Flynn, R.  (eds.) Bristol: Polity Press.

Berghs, M. 2018. Ethical (Dis)enchantment, Afflictive Kinship and Ebola Exceptionalism. Disability and Everyday Worlds. Thomas, G. & Sakellariou, D. (eds.) New York: New York University Press.

Berghs, M. 2017. Cash not Care: The Planned Demolition of the UK Welfare State. By Stewart, Mo. New Generation Publishing: London. 2016. 188pp. £15.99. ISBN 978-1-78507-783-8. Self & Society, 336-337.

Berghs, M. Atkin, K., Graham, H., Hatton, C. & Thomas, C. 2017. Public health, research and rights: The perspectives of deliberation panels with politically and socially active disabled people. Disability & Society, 32 (7): 945-965.

Berghs, M., Dyson, S.M. and Atkin, K., 2017. Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair. Health, 21 (2): 171-188.

Berghs, M. 2017. Emancipatory Engagement and Co-Production: Disability Research for Activism. London: Sage Research Case Methods. http://dx.doi.org/10.4135/9781473950139

Berghs, M. 2017. Practices and disourses of Ubuntu: Implications for an African model of disability. African Journal of Disability, (6) a292. http://doi.org/10.4102/ajod.v6.292

Berghs, M. 2016. Disabled states and impaired citizens in the global south: Bio, necro to impairometrics. Minority Reports. Cultural Disability Studies, (2), pp. 237-256.

Berghs, M. and Kabbara, N. 2016. Disabled people in conflicts and wars. In Disability in the Global South (pp. 269-283). London: Springer.

Berghs, M.J., Atkin, K.M., Graham, H.M., Hatton, C. and Thomas, C., 2016. Implications for public health research of models and theories of disability: a scoping study and evidence synthesis. Public Health Research, (4) 8.

Atkin, K., Berghs, M. and Dyson, S., 2015. ‘Who's the guy in the room?’Involving fathers in antenatal care screening for sickle cell disorders. Social Science & Medicine, 128, pp.212-219.

Berghs, M., 2016. War and embodied memory: Becoming disabled in Sierra Leone. London: Routledge.

Dyson, S.M., Berghs, M. and Atkin, K., 2016. ‘Talk to Me. There’s Two of Us’: Fathers and Sickle Cell Screening. Sociology, 50 (1): 178-194.

Berghs, M. and Kabbara, N., 2016. Disabled people in conflicts and wars. In Disability in the Global South (pp. 269-283). Springer International Publishing.

Berghs, M., 2016. Local and Global Phantoms: Reparations National Memory and Sacrifice in Sierra Leone. Rethinking Disability: World Perspectives in Culture and Society, p.275.

Berghs, M., 2016. Shakespeare, T.(ed.) Disability Research Today: International Perspectives. London and New York: Routledge. 2015. 254pp£ 29.99 ISBN 978–0415748445.

Berghs, M., 2016. Neoliberal policy, chronic corruption and disablement: biosecurity, biosocial risks and the creation of ‘Ebola survivors’?. Disability & society, 31(2), pp.275-279.

Berghs, M., 2015. Disability and displacement in times of conflict: Rethinking migration, flows and boundaries. Disability and the Global South, 2(1), pp.442-459.

Berghs, M., 2015. Gun violence, disability & recovery. Disability & Society, 30 (3): 484-5.

Conteh, E. and Berghs, M., 2014. ‘Mi At Don Poil’: A Report on Reparations in Sierra Leone for Amputee and War-Wounded People. Draft report, Amputee and War-Wounded Association, Freetown, Sierra Leone.

Berghs, M., Atkin, K. and Dyson, S., 2014. Involving Fathers in Ante-Natal Screening for Sickle Cell Disorders: Improving Informed Decision-Making. York: University of York.

Berghs, M., 2014. The new humanitarianism: Neoliberalism, poverty and the creation of disability. Disability, human rights and the limits of humanitarianism, pp.27-44.

Berghs, M. 2014. Native American communities on health and disability: borderland dialogues. Disability & Society,  29 (6), pp. 985-987.

Berghs, M., 2013. The global economy of care. Disabling barriers-enabling environments. London: Sage.

Berghs, M., 2011. Embodiment and emotion in Sierra Leone. Third World Quarterly, 32(8), pp.1399-1417.

Berghs, M. and Dos Santos-Zingale, M., 2011. A comparative analysis: everyday experiences of disability in Sierra Leone. Africa Today, 58(2), pp.18-40.

Berghs, M., 2010. Coming to terms with inequality and exploitation in an African state: Researching disability in Sierra Leone. Disability & Society, 25(7), pp.861-865.

• Disability paradigms in global north and south
• Disability, humanitarianism and conflict
• Disability, social movements, activism and rights
• Social aspects of sickle cell, gendered access to reproductive technology and involvement in RCTs
• Genomic research and the involvement of families and children
• Chronic illness and ableism
• Global public health and interventions for equity
• Sociology and anthropology of cure
• Understanding impact of COVID-19 on chronic illness and disabilities 

• Medical Sociology
• Global Public Health
• Disability
• Gender

MA Philosophy (University of Leuven, Belgium)
MA Social and Cultural Anthropology (University of Leuven, Belgium)
PhD in Sociology and Social Policy (University of Leeds, United Kingdom)

Maria has a PGCLTHE and is a HEA fellow. She has taught across the Health and Wellbeing in Society undergraduate programme supporting all modules and was a dissertation supervisor. She was module lead on Social Aspects of Health and Illness and has been co-module lead on the introductory module on Social Research Methods. She is now an Associate Professor on the Global Health MSc and module leader on the  Dissertations and Interventions in Global Health modules. She is a dissertation supervisor, personal tutor, PhD supervisor and also teaches research methods at PhD level. She is an internal PhD examiner at DMU. She is an external PhD examiner.  She is an external examiner at University of Birmingham. 

Member of the Sickle Cell Society, United Kingdom Thalassaemia Society and NHS SCT Screening Programme: Engagement, Outreach and Programme Development Advisory Group

Leicester Royal Infirmary - Steering Group - Sickle Cell and Thalassaemia

Member of the Sierra Leone Sickle Cell Forum - Technical Working Group

Advisor - European Hematology Association (EHA)  - Guidelines project for screening recommendations 

Member of Ethics of Medical Photography Network

British Sociological Association (BSA) - Medical Sociology

 European Association of Social Anthropologists

The Royal Anthropological Association

Government Events’ The Supporting Disabled People in the Workplace Conference 2024, taking place online 15th of October 2024. (Chair and Invited Talk with Wilkinson M., Taking Action to Address the DIsability Employment Gap and Address Workplace Stigmas).

Azienda USL - IRCCS, Reggio Emilia, Social Aspects of Sickle Cell Disease: Research, Action, Participation, 28th of September, Invited Talk.

University of Leeds, Debility, Disability and Pedagogic Practices in Disability Studies: Teaching and Researching Disability in Contemporary Times, 3rd of September 2024, Panel Talk.

University of Birmingham, Trust, Social Media, and Societal Health, Workshop, 14th December 2023, Panel Talk. 

4S, Honolulu,9th November 2023, Curating the babies? Biosociality, Carriership and Techno-Cripepistemologies, Berghs,M.,[Online presentation]

Shining light and hope on invisible illnesses. Saturday, October 7th, 2023, Butetown Community Centre, Cardiff, Equity in Health and Social Care Delivery. Berghs, M., Invited Talk.

Thackray Museum of Medicine Insights, 1st of October 2022, The story of sickle cell (SC) disease: its discovery, evolution and future, Thomas, I., Berghs, M. & Ebseno, B. Invited Talk. https://thackraymuseum.co.uk/event/insights-medical-stories-from-africa/

4th Global Congress on Sickle Cell Disease, 16th -18th of June 2022, Is screening for diabetes II among patients with sickle cell trait a potential example of structural racism in healthcare? Cronin de Chavez, A., Berghs, M., Ebenso, B., Ola, B. Poster presentation Dr. Cronin de Chavez.

4th Global Congress on Sickle Cell Disease, 16th -18th of June 2022, Understanding Barriers to and Enablers in Employment for People with Sickle Cell Disorders in England, Berghs, M. & Dyson, S.M. Poster presentation Dr. Berghs.

WRDPT, Inequality, Exploitation and Ethnographical Research in Low and Middle-Income Countries, 9th of May 2022, Advanced Qualitative Methods Training. Invited Talk Dr. Berghs. 

British Sociological Association (BSA), Building Equity and Justice Now, 21st of April 2022, Protests, refusals and counting the deaths: The development of an empirical-ethics of cure. Presenter Dr. Berghs. 

Institute of Philosophy and Sociology, Polish Academy of Sciences (IFiS PAN), Warsaw, Poland, Assemblages of Rare Diseases, 10-11 March, 2022, ‘You can’t use this to discriminate against us, nor will you use it to deny us healthcare’ – exclusion of carriers of sickle cell disease from healthcare who experience symptoms. Cronin de Chavez, A., Berghs, M., Ebenso, B. & Ola, B. Presenter: Dr. Cronin de Chavez. 

Institute of Philosophy and Sociology, Polish Academy of Sciences (IFiS PAN), Warsaw, Poland, Assemblages of Rare Diseases, 10-11 March, 2022,The Futures of Biosocial Models of Carriership and Sociology of Cures: Sickle Cell, Thalassaemia and Genomic Frontiers. Berghs, M., Ebenso, B., Cronin de Chavez, A.  & Ola, B. Presenter: Dr. Berghs

RAI, Mobilizing Methods in Medical Anthropology, London, 18-21 January 2021, Collaborations, Confounders and Ethical Misgivings, Presenter Dr. Berghs.

UMASCCO Education and Workplace Series, 1st of October, 2021, Sickle Cell in Schools: Translating the Evidence, Invited Talk, Dr. Berghs.

East Midlands Sickle Cell and Thalassaemia Education Event & Network Business Meeting, 25th of June 2021, The Psychological Impact and Social Needs of People with Sickle Cell and Thalassaemia as a result of COVID-19: Some Findings from the Pilot Study. Invited Talk, Presentation given by Francesca Horne.

Sickle Cell Society Ireland, 19th of June 2021, Invited Expert on Panel, Dr. Berghs.

Health NGO Forum Sierra Leone on SCD, December 1st, 2020, Sierra Leone Sickle Cell in Schools, Invited Talk, Dr. Berghs. 

SCD Talks organised by Australian Sickle Cell Advocacy Inc, 'Social Relationships in Sickle Cell Disease", 26th of September 2020, Invited Expert Panelist Dr. Berghs.

49th UK Forum on Haemogobin Disorders Conference in Honour of Professor David Weatherall, St. Catherine’s College, Oxford University, Oxford, 14th November 2019. Sickle Cell and Gender in Sierra Leone: Why North-South Partnerships Matter. Berghs, M., Gabba, A., Nyandemo, S.E., Dyson, S.M., Roberts, G. T. & Deen, G. Presentation given by Dr. Berghs.

11^th International Critical Management Studies Conference, Open University, 27-29^th June 2019. They can replace you at any time: Ableism and sickle cell in the UK, Berghs, M., Morrison, V.  & Dyson, S.M. Presentation given by V. Morrison and Dr. Berghs.

Intergenerational Futures Workshop: A workshop on public health and life-course, Darwin College, University of Cambridge, 14th of June 2019.

Sickle Cell Anaemia Symposium, Coventry University, 8 October 2018. Sickle Cell Disease: Sickle Cell Disorder, Dyson, S.M., Berghs, M. & Morrison, V. Presentations given by Professor Dyson and Morrison, V.

Sickle Cell and Thalassaemia 30th Anniversary Conference, Nottingham University Hospitals NHS Trust, 18 September 2018. Sickle Cell and Employment: Why Understanding a Health Condition is a Key Resource, Oyeyiola, D. Berghs, M. & Dyson, S.M., Presentation given by Oyeyiola, D.

Lancaster Disability Studies, Lancaster University, 11th to 13th of September 2018, Sickle Cell and Employment Activism, Keimbe, M., Berghs, M. & Dyson, S.M., Presentation given by Keimbe, M. and Dr. Berghs.

Lancaster Disability Studies, Lancaster University, 11th to 13th of September, Routledge Handbook of Disability Activism Symposium, Convenor Dr. Berghs.

Creating diverse coalitions for equality in neoliberal times? :  Locating the emancipatory city , Conference 4th of July 2018, British Sociological Association (BSA) and the Centre for Urban Research on Austerity (CURA) at De Montfort University, Co-organiser with: K. Fearon, P. Papaloukas, S. Rivzi, The People’s Forum, Bright Sparks, Arts in Mental Health- Leicestershire NHS Partnership Trust, and De Montfort University.

International Health Congress, St Hughes, Oxford, 29^th to 30^th of June 2018. Researching a Neglected Public Health Issue: Sickle Cell and Gendered Research Advocacy for Practice in Sierra Leone. Berghs, M., Dyson, S. M., Gabba, A., Nyandemo, S.E., Roberts, G. T. & Deen, G., Presentation given by Dr. Berghs.

Social Justice, Social Work and Participation. Research Seminar: Involving service users in research and service design and delivery. De Montfort University, 27 September 2017, From emancipatory disability research in Sierra Leone to working with politically active disabled people in the UK. Berghs, M.

British Sociological Association - Medical Sociology Conference, University of York, 13th to 15th September 2017, The platitudes of public sociology: Can human rights lead to an ethics for equity? Berghs, M., Atkin, K., Graham, H., Hatton, C. & Thomas, C., Presentation given by Dr. Berghs.

Science in Public: Science, Technology & Humanity. University of Sheffield. 10-12^th of July 2017. Science, Policy and Political Legitimation:  Rethinking Evidence (RCTs) for Policy.  Berghs, M., Atkin, K., Graham, H., Hatton, C. & Thomas, C.. Presentation given by Dr. Berghs.

BSA Postgraduate Forum Regional Event: Public Sociology and the Role of the Researcher: Engagement, Communication and Academic Activism. De Montfort University, March 19th 2017. Workshop.

Sierra Leone Multi-Sectorial Strategy to Prevent & Control Anaemia (2017 to 2025) Conference, Freetown, 9th of March 2017. Sickle Cell: A Neglected Public Health Issue. Berghs, M. & Dyson, S., Presentation given by Dr. Berghs.

Simmonds, B. A., & Berghs, M. 2024. Editorial: Intersections of ageing and disability during the COVID-19 pandemic. Frontiers in Sociology, 9, 1501580. Frontiers | Editorial: Intersections of ageing and disability during the COVID-19 pandemic

Berghs, M., Horne, F., Yates, S., Kemp, R. & Webster, A. 2024 The indignities of shielding during the COVID-19 pandemic for people with sickle cell: An Interpretive Phenomenological Analysis, Special Issue Intersections of Aging and Disability During the COVID-19 Pandemic: Frontiers in Medical Sociology, 9: doi: 10.3389/fsoc.2024.1334633

Berghs, M., Horne, F., Yates, S., Kemp, R. & Webster, A. 2024 The indignities of shielding during the COVID-19 pandemic for people with sickle cell: An Interpretive Phenomenological Analysis, Special Issue Intersections of Aging and Disability During the COVID-19 Pandemic: Frontiers in Medical Sociology, 9: doi: 10.3389/fsoc.2024.1334633

Ola, B., Olushola, O., Ebenso, B. & Berghs, M. 2024. Sickle Cell Disorder and Its Psychosocial Burdens in Africa. In Sickle Cell Disease in Sub-Saharan Africa Public Health Perspectives. Bukola, B., Kanayo,K & Inusa, B. (eds.) Sickle Cell Disease in Sub-Saharan Africa | Public Health Perspectives (taylorfrancis.com)

Berghs, M., Ebenso, B. & Ola B. 2024. The Social Determinants of Severity in Sickle Cell. In Sickle Cell Disease in Sub-Saharan Africa Public Health Perspectives. Bukola, B., Kanayo,K & Inusa, B. (eds.) Sickle Cell Disease in Sub-Saharan Africa | Public Health Perspectives (taylorfrancis.com)

Berghs, M. 2024. The Critical Importance of Global Collaboration in Sickle Cell Advocacy and Management. In Sickle Cell Disorders in Sub-Saharan Africa. Bukola, B., Kanayo,K & Inusa, B. (eds.) Sickle Cell Disease in Sub-Saharan Africa | Public Health Perspectives (taylorfrancis.com)

Afeworki Abay, R. & Berghs, M. 2024. Impossible Working Lives and Disabled Bodies during Racialised Capitalism: Perspectives from Germany and the United Kingdom. In Intersectional Colonialities, Embodied Colonial Violence and Practices of Resistance at the Axis of Disability, Race, Indigeneity, Class, and Gender. Afeworki Abay R. & Soldatic, K. (eds.). London: Routledge. Intersectional Colonialities: Embodied Colonial Violence and Practices (routledge.com)

Afeworki Abay, R. & Berghs, M. 2024. Impossible Working Lives and Disabled Bodies during Racialised Capitalism: Perspectives from Germany and the United Kingdom. In Intersectional Colonialities, Embodied Colonial Violence and Practices of Resistance at the Axis of Disability, Race, Indigeneity, Class, and Gender. Afeworki Abay R. & Soldatic, K. (eds.). London: Routledge. Intersectional Colonialities: Embodied Colonial Violence and Practices (routledge.com)

 Berghs, M. 2023. Philosophical and practical challenges of Ubuntu: Application to decolonial activism and conceptions of personhood and disability. In: Southern Theories Contemporary and Future Challenges. Mutanga, O. and Marovah,T.  (Eds.), London & New York: Routledge. Southern Theories: Contemporary and Future Challenges - 1st Edition - (routledge.com)

Atkin, K.M., Berghs, M., & Chattoo, S. 2023. Representing Disabling Experiences: Rethinking Quality of Life when Evaluating Public Health Interventions. Politics & Policy, 1-57.  https://doi.org/10.1111/polp.12515

Berghs, M. & Ebenso, B. 2023. Social Science Research & Sickle Cell. In Handbook of Social Sciences and Global Public Health.  Liamputtong, P. (Eds), Cham: Springer.  https://link.springer.com/referencework/10.1007/978-3-030-96778-9?page=1#toc

Berghs, M., Horne, F., Yates, S., Graham, S., Kemp, R., Webster, A. & Howson, C. 2022. Black Sickle Cell Patients’ Lives Matter: Healthcare, long- term shielding and psychological distress during a racialized pandemic in England – a mixed-methods study. BMJ Open, http://dx.doi.org/10.1136/bmjopen-2021-057141

Cronin de Chavez, A., Berghs, M., Ola, B. & Ebenso, B. 2022. Is screening for diabetes II among patients with sickle cell trait a potential example of structural racism in healthcare? Hemasphere, 6: 56-57.

Coen-Sanchez, K., Ebenso, B., El-Mowafi, I. M., Berghs, M., Idriss-Wheeler, D., & Yaya, S. 2022. Repercussions of overturning Roe v. Wade for women across systems and beyond borders. Reproductive Health, 19(1), 1-5. https://reproductive-health-journal.biomedcentral.com/articles/10.1186/s12978-022-01490-y

Berghs, M, Dyson, M.A., Gabba, A., Nyandemo, S., Roberts, G., Deen, G. and Thomas, I. 2022 “I want to become someone!” Gender, Reproduction and the Moral Career of Motherhood for Women with Sickle Cell Disorders, Culture, Health and Sexuality, https://doi.org/10.1080/13691058.2022.2083239

Berghs, M. 2022. Let's Get Back to Normal? COVID-19 and the Logic of Cure. Frontiers in Sociology, 7. https://dx.doi.org/10.3389%2Ffsoc.2022.782582

Berghs, M. 2022. An African Path to Disability Justice: Community, Relationships and Obligations: by Oche Onazi, Cham, Springer, 2020, xix+ 179 pp. Canadian Journal of African Studies, 

Berghs, M, Dyson, S.M., Greene, A.M., Atkin, K. and Morrison, V. 2021. ‘They Can Replace You at Any Time!”: (In)Visible Hyper-Ableism, Employment and Sickle Cell Disorders in England, Scandinavian Journal of Disability Research, https://www.sjdr.se/articles/10.16993/sjdr.831/

Dyson, S.M., Atkin, K., Berghs, M., Greene, A.M. 2021. On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England. Social Science & Medicine, 272, 113713. https://www.sciencedirect.com/science/article/abs/pii/S0277953621000459

Berghs, M. 2021. Who gets cured? COVID-19 and developing a critical medical sociology and anthropology of cure. Frontiers, https://doi.org/10.3389/fsoc.2020.613548

Berghs, M. & Dyson, S.M. 2020. Intersectionality and Employment in the United Kingdom: Where are all the Black Disabled People? Disability & Society, 1-24.

Berghs, M., Dyson, S.M., Gabba, A., Nyandemo, S.E., Roberts, G., Deen, G. 2020. "You have to find a caring man, like your father!" Gendering sickle cell and refashioning women's moral boundaries in Sierra Leone. Social Science & Medicine, 259, 113-148.

Berghs, M., Ebenso, B., de Chavez, A.C. & Ola, B. 2020. Time to apply a social determinants of health lens to addressing sickle cell disorders in Sub-Saharan Africa. BMJ Global Health, 5:e002601.

Peña-Fernández, A., Anjum, U., Wadoum, R. E. G., Koroma, S., & Berghs, M. 2020. Competing ethics in a pilot strategy to implement parasitology training and research in post-Ebola Sierra Leone. International Health, 12 (6): 509-514.

Berghs, M. 2020. Biosocial Model of Disability. In Encyclopedia of Gerontology and Population Aging, Gu, D. & Dupre, M.E. (eds.) Cham: Springer.

Berghs, M., Morrison, V., Sokhal, K., & Dyson, S. 2019. Sickle Cell, Work and Employment: A Guide for Employers and Employees on Sickle Cell Disorder (SCD). Leicester: De Montfort University.

Berghs, M., Atkin, K., Hatton, C. & Thomas, C.  2019. Rights to Social Determinants of Flourishing: A Paradigm for Disability and Public Health Research and Policy, BMC Public Health, 19: 997.

Cronin de Chavez, A., Atkin, K. Babbington, F., Berghs, M.J., Dyson, S.M.,Miller, A., & Whitelaw D. 2019. Incidental finding of sickle cell trait from an everyday diabetes test – should the general practitioner report? retest? refer? Clinical Diabetes, 38 (1): 101-107.

Berghs, M., Gabba, . E.; Nyandemo, S.E., Dyson,S.M., Deen, G. F. & Roberts, G.T. 2019. "We di woman den, na we di suffer": A Report on Sickle Cell in Sierra Leone. Leicester: De Montfort University.

Berghs, M., Atkin, K., Hatton, C. & Thomas, C. 2019.Current Issues: Do disabled people need a stronger social model - a social model of human rights. Disability & Society, 1-6.

Berghs, M., Chataika, T., El-Lahib, Y. & Dube, A.K. (eds.). 2019. The Routledge Handbook of Disability Activism. London and New York: Routledge. (2019 Taylor & Francis Award for Most Outstanding Social Science Handbook https://bit.ly/2zWZb7c)

 

POST note on personalized medicine for inherited blood diseases; sickle cell and beta-thalassemia: Approved Work: Personalised medicines for Sickle Cell and Thalassemia - POST (parliament.uk)

Peacebuilding and the inclusion of persons with disabilities (OHCHR): A/78/174: Peacebuilding and the inclusion of persons with disabilities - Report of the Special Rapporteur on the rights of persons with disabilities | OHCHR

COVID-19 parliamentary expertise on health inequalities: Expert acknowledgements - POST (parliament.uk)

COVID-19 written evidence submission on impact on health inequalities: committees.parliament.uk/writtenevidence/2967/pdf/

Member of UNESCO Inclusive Policy Lab:Maria Berghs | UNESCO Inclusive Policy Lab 

Report on the impact of ableism in medical and scientific practice (OHCHR): OHCHR | Report on the impact of ableism in medical and scientific practice

Member of the Ebola Response Anthropology Platform: Ebola Response Anthropology Platform (ebola-anthropology.net) 

Fiona Relf, research PhD, (2nd supervisor): A Foucauldian Discourse Analysis of interviews with Senior Managers of Special Educational Needs and Disabilities within Local Authorities across England (Completed)

Sharon Anyiam, research PhD, (1st supervisor): Black millennial identity, criminalisation and resistance

Heather Cole, research PhD, (2nd supervisor):  Voices from the Conflict Zone; a trans-cultural ethnographic anthropology of feminist activism in humanitarian spaces 

Barriers and enablers to employment: Black disabled peoples living with Sickle Cell Disorders (SCD), DRILL-UK and the National Lottery, 2018-2020, Research Fellow and CI, PI: S. Dyson, Partners: Sickle Cell Society and the Organisation for Sickle Cell Anaemia Research Sandwell Company Ltd.  

https://www.sicklecellsociety.org/resource/employment/

Implications for Public Health: Research of Models and Theories of Disability, NIHR-PHR, 2014-2016, PI: K. Atkin, CI: M. Berghs, H. Graham, C. Hatton and C. Thomas.  

https://www.journalslibrary.nihr.ac.uk/programmes/phr/1218214/#/

COVID-19: The Psychological and Social Impacts of Shielding on People with Sickle Cell Disorders in the Midlands, DMU VC2020 Project, June 2020-March 2021, DMU, NHS, OSCAR Birmingham and OSCAR Sandwell on a co-produced project led by NHS (Leicester).

A Gender Issue: Women and Sickle Cell in Sierra Leone, DMU VC2020 Project, June 2018- June 2019, PI, Co-investigators: S. Dyson, G. Roberts, G. Deen, A.Gabba (SLSCD), S. Nyademo (SCCAN).

Creating diverse coalitions for equality in neoliberal times? :  Locating the emancipatory city , Conference 4th of July 2018, British Sociological Association (BSA) and the Centre for Urban Research on Austerity (CURA) at De Montfort University, Co-organiser with: K. Fearon, P. Papaloukas, S. Rivzi, The People’s Forum, Bright Sparks, Arts in Mental Health- Leicestershire NHS Partnership Trust and De Montfort University. 

Editorial Board of BMC, PLOS ONE and International Journal of Disability and Social Justice.

I peer-review for a variety of journals such as BMJ, Social Science & Medicine, PLOS ONE, Sociology of Health and Illness, Fontiers, Medical Anthropology, BMC, Health, Cultural Anthropology, Ethnicity & Health and African Journal of Disability among others.

I review books on disability for differing journals as well as publishing houses such as Berghahn, Palgrave, Polity, Oxford University Press etc. I am an editorial Board Member for: Berghahn Book Series– Disability and Chronicity Through the Ethnographic Lens.

I also review  grants for funders like the ESRC, NIHR and Wellcome Trust, as well as international and national funders externally to the United Kingdom.

COVID-19 sickle cell and wellbeing project

Project Report: Ask me if I am okay?https://dora.dmu.ac.uk/bitstream/handle/2086/21014/REPORT%20COVID%20AND%20SHIELDING%20FINAL.pdf?sequence=3&isAllowed=y

National Haemoglobinopathy Panel: https://www.nationalhaempanel-nhs.net/educational-resources-and-materials

South Thames Sickle Cell and Thalassaemia Network: https://www.ststn.co.uk/wp-content/uploads/2021/01/Guide-To-Sickle-Cell-and-Wellbeing-2020.pdf

Sickle Cell Foundation of Alberta, Canada: Guide to Sickle Cell and Employment – Sickle Cell Foundation of Alberta (ourscfa.org)

DRILL Sickle cell and employment project

Individual Support Plans can Ensure Better Working Life for People with Disabilities:

https://www.econotimes.com/Individual-support-plans-can-ensure-better-working-life-for-people-with-disabilities-1569064

https://theconversation.com/individual-support-plans-can-ensure-better-working-life-for-people-with-disabilities-125760

https://uk.sports.yahoo.com/news/individual-support-plans-ensure-better-125431008.html

https://www.dhakatribune.com/opinion/op-ed/2019/12/03/towards-a-better-working-life

https://idisabled.com.au/news/

https://flexpertise.com.au/news/

https://eachother.org.uk/individual-support-plans-disabilities/

https://ourscfa.org/guide-to-sickle-cell-and-employment/

http://englishbulletin.adapt.it/wp-content/uploads/2020/01/The-Future-of-Work-ADAPT-Special-Bulletin-in-collaboration-with-WEC-n.-11_2019.pdf

https://scinfo.org/2020/02/05/sickle-cell-news-for-february-2020/

https://lstg.org.uk/news/

How to support employees with sickle cell disorders

https://www.hrmagazine.co.uk/content/features/how-to-support-employees-with-sickle-cell-disorders

Ensuring diversity and inclusion - Guide to sickle cell work and employment for employers and employees (Workers Individual Support Plans)

https://croydoncc.wordpress.com/2019/10/22/ensuring-diversity-and-inclusion-guide-to-sickle-cell-work-and-employment-for-employers-and-employees

Sickle cell and gender project 

"Wi di women den, na we di suffer": A report on sickle cell and gender in Sierra Leone

 https://core.ac.uk/download/pdf/228187059.pdf

Sickle cell and education project (Sierra Leone)

Sikul Sel Song (In Krio by Sam Macauley with Sierra Leone Sickle Cell Society)

 http://sicklecellanaemia.org/author/admin/

Sickle cell educational policy guides for schools (Sierra Leone)

http://sicklecellanaemia.org/policy/guide-for-schools-sierra-leonean-approach/

https://www.globalsicklecelldisease.org/online-educational-tools

https://sicklecellnews.com/tag/sierra-leone/

Sickle Cell and Higher Education Guides

Higher Education – The Social Study of Thalassaemia and Sickle Cell (TASC) Unit

 Sickle Research in Policy Documents

Analysis of the legal and human rights requirements for genomics in and outside the EU

https://ec.europa.eu/research/participants/documents/downloadPublic?documentIds=080166e5c2e1586f&appId=PPGMS

Disability Research in Policy Documents, Reports and Briefs

Disability Evidence Review - Transforming Access and Outcomes in Higher Education (TAS0): Uni-Lincoln-Disability-Evidence-Review-with-TASO.pdf

Standards for the Clinical Care of Adults with SIckle Cell: https://www.sicklecellsociety.org/wp-content/uploads/2018/05/Standards-for-the-Clinical-Care-of-Adults-with-Sickle-Cell-in-the-UK-2018.pdf

Sickle Cell Disease in Childhood: Standards and Recommendations for Clinical Care: https://www.sicklecellsociety.org/wp-content/uploads/2019/11/SCD-in-Childhood_Final-version-1.pdf

OHCHR Report on the impact of ableism in medical and scientific practice:  https://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/BioethicsDisabilities.aspx

Leonard Cheshire - Research briefing on the Impact of the 2013-2016 Western African Ebola epidemic on people with disabilities: https://www.leonardcheshire.org/sites/default/files/2020-05/LC-evidence-briefing-Ebola.pdf

UNICEF- Children with Disabilities in Situations of Armed Conflict: https://reliefweb.int/sites/reliefweb.int/files/resources/Children_with_disabilities_in_sutuations_of_armed_conflict.pdf

CSVR -Policy Brief: Addressing diversity and inclusion through transitional justice: https://media.africaportal.org/documents/Addressing_Diversity_and_Inclusion_Policy_Brief_2020.pdf

Institute of Development Studies  (K4D) -Women and girls with disabilities in conflict and crises:  https://assets.publishing.service.gov.uk/media/5b9a458540f0b67866ffbd56/032-Women_and_girls_with_disabilities_in_crisis_and_conflict.pdf

Equality and Human Rights - Disability Reading List: https://www.equalityhumanrights.com/en/our-research/reading-lists/disability-reading-list

Disability Visibility Campaign UEA 2021 - Disability Reading List:  https://www.ueasu.org/engage/disvis/

 Disability Activism Edited Book Reading Lists:

https://rl.talis.com/3/shu/lists/96639EB6-2092-381C-E4FB-59C79F3B2667.html

https://www.teesadvance.co.uk/teesside/reading-list/module/149304

http://lib5.leeds.ac.uk/rlists/broker/?bbModuleId=202122_14945_SLSP5216M&bbListId=_8811938_1&s=m