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Dr Maria Berghs

Job: Senior Lecturer

Faculty: Health and Life Sciences

School/department: School of Allied Health Sciences

Research group(s): Health Studies and Sociology

Address: Edith Murphy Building, Office 6.08, Faculty of Health and Life Sciences,The Gateway, LE1 9BH

T: +44 (0)116 257 7910

E: Maria.Berghs@dmu.ac.uk

W: http://www.dmu.ac.uk/hls

 

Personal profile

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), 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 is at De Montfort University to work with the esteemed Professor Simon Dyson and is the Director of the Social Study of Thalassamia and Sickle Cell Unit (TASC). You can read about the impact of the work of the TASC Unit and access their resources online at: https://sdyson.our.dmu.ac.uk/   They also have social science teaching resources on sickle cell which are reseach informed and free to use: https://sickle.our.dmu.ac.uk/

 The Unit is now working on: 

1) Sickle Cell Society and the Organisation for Sickle Cell Anaemia Research (OSCAR)-Sandwell on the Big Lottery and Disability Research on Independent Living (DRILL) project, "Barriers and enablers to employment: Black disabled peoples living with sickle cell disorders."  http://sicklecellwork.dmu.ac.uk/

2) The Sierra Leone Sickle Cell Society and the Sickle Cell Carers Awareness Network on: "A Gender Issue: Women and Sickle Cell in Sierra Leone."  http://sdyson.our.dmu.ac.uk/sierra-leone/

3) DMU, NHS, OSCAR Birmingham and OSCAR Sandwell on a co-produced project led by NHS (Leicester): "COVID-19: The Psychological and Social Impacts of Shielding on People with Sickle Cell Disorders in the Midlands." https://sdyson.our.dmu.ac.uk/sickle-cell-and-covid-19/

Research group affiliations

Unit for the Social Study of Thalassaemia and Sickle Cell.

Health Policy Research Group

Institute of Allied Health Sciences Research

Research interests/expertise

• 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 

Areas of teaching

  • Medical Sociology
  • Global Public Health
  • Disability
  • Gender

Qualifications

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)

Courses taught

Maria has a PGCLTHE and is a HEA fellow. She teaches across the Health and Wellbeing in Society undergraduate programme supporting all modules. She is module lead on Social Aspects of Health and Illness and co-module lead on the introductory module on Social Research Methods. She will also be a module lead on the Global Masters programme. She is an undergraduate and postgraduate dissertation supervisor, personal tutor, PhD supervisor and also teaches research methods at PhD level.

Membership of external committees

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

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

Membership of professional associations and societies

British Sociological Association (Medical Sociology)

American Anthropological Association (Medical Anthropology)

Society for Disability Studies

European Association of Social Anthropologists

Association for Studies in Innovation and Technology (AsSIST)

Canadian Healthcare Ethics Network

Conference attendance

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.

11th International Critical Management Studies Conference, Open University, 27-29th 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, 29th to 30th 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. 10-12th 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.

Recent research outputs

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 & Medicine272, 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. Africa91(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. (See http://www.disabilityactivism.com and 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.

Consultancy work

COVID-19 parliamentary expertise on health inequalities: 

http://post.parliament.uk/expert-aknowledgements/

COVID-19 written evidence submission on impact on BAME health inequalities:

http://committees.parliament.uk/writtenevidence/2967/pdf/

Member of UNESCO Inclusive Policy Lab

https://en.unesco.org/inclusivepolicylab/users/maria-berghs

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

https://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/BioethicsDisabilities.aspx

Member of the Ebola Response Anthropology Platform:

http://www.ebola-anthropology.net/

 

Current research students

 Sharon Anyiam, research PhD, (2nd supervisor): Black Student Activism

 Tonio Axisa, research PhD, (2nd supervisor): Retention, Dsability and Employment

Heather Cole, research PhD, (3rd supervisor):  Voices from the Conflict Zone; a trans-cultural ethnographic anthropology of feminist activism in humanitarian spaces

Fiona Relf, research PhD, (3rd supervisor): What is the role of parents in the development of Education, Health and Care Plans (EHCPs)?

Externally funded research grants information

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/#/

Internally funded research project information

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. 

Professional esteem indicators

Editorial Board of BMC and PLOS ONE. Occasional editorial duties for journals such as BMJ, Social Science & Medicine, PLOS ONE, 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 Palgrave, Polity, Oxford University Press etc. I also review  grants for funders like the ESRC, NIHR and Wellcome Trust, as well as international funders externally to the United Kingdom.

Case studies

COVID-19 sickle cell and wellbeing project

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

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

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 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

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

NICE Evidence - University of York - Centre for Reviews and Dissemination

https://www.crd.york.ac.uk/crdweb/Showrecord.asp?LinkFrom=OAI&ID=32016000885&LinkFrom=OAI&ID=32016000885

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.uea.su/disvis/

 

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