Stigma: Where’s the Harm?

Posted by Dr Michelle Addison, Assistant Professor, Durham University

Stigma is a knotty, ugly problem we have in society: it marks out (often painfully) what is considered shameful, abject or contra to social norms, and impacts vulnerable and marginalised people the most. It seems intuitive to say it is unfair and unjust, but why then does it persist? 

Discussions of stigma are not new; we are all generally aware that stigma is something to be avoided and we could all very likely give some examples of it in action – benefit claimants, people who use drugs and ex-offenders are often easy targets and regularly feature in news headlines because stigma continues to be sensational – it elicits a voyeuristic feeling that is both intoxicating and a warning to us too. The use of stigma is further exacerbated by the ‘Cost of Living Crisis’, ‘Rising Interest Rates’, Fuel and Food poverty, and the withholding of the Government White Paper on Health Inequalities. We understand then that stigma is harmful, and yet we recognise it is powerful to those who can wield it.  

Erving Goffman discussed stigma using the concept of the ‘spoiled identity’ whereby certain aspects of who you are become discredited and devalued in his now infamous work Stigma: Notes on the Management of Spoiled Identity (1963/1990). This notion of a spoiled identity is also implicit in his observations of patients residing in ‘asylums’, the conditions impacting these people, and the roles of those working there (1961). Indeed, Goffman was acutely interested in the medicalisation and performance of roles in these settings and how behaviour was shaped by social expectations of ‘in-mates’, ‘guards’ and ‘medical staff’. The treatment of patients, he noted, was complexly bound up with expectations of socially acceptable roles and the reinforcement of discredited behaviours and identity.

What we learnt from this is that stigma matters in the social organisation and hierarchies of people and places in medicalised and wider social settings. But what tends to fly under the radar in early stigma research is the question of ‘in whose interests’ does stigma serve?  Professor Imogen Tyler later critiques Goffman’s work (2020) in her book ‘Stigma: The Machinery of Inequality’ for overlooking the power relations that are integral to how we understand stigma, and why indeed, stigma continues to persist. Tyler shows us that there is a ‘craft’ to how mechanisms of stigma operate and function to maintain political power and a social order that hinges on systemic and structural inequalities around class, race, gender (and not limited to) to reproduce privilege for the dominant factions. This is a hugely important step in stigma research because it draws attention upstream to how and why stigma is weaponised (Scambler, 2018) and the social harms that impact marginalised and minoritised individuals and communities in society – which is the subject of my forthcoming article (Addison, 2023). This is further evident in the recent Stigma Kills (2021, 2022) campaign launched by the NHS Addictions Provider-Alliance which gives credence in particular to the impact that stigma has on the health and wellbeing of those communities that are most harmed through health and social inequality.

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Stigma Kills. But it shouldn't have to be this way.

Introducing our new #StigmaKills campaign. https://t.co/wgVnROwb5P pic.twitter.com/Rc35eCxo1M

— NHS Addictions Provider Alliance (@NHS_APA) February 8, 2022

This growing concern about the effects of stigma on health and wellbeing, arising out of social harm, led to our recent Fuse event Inequalities, Social Harm and Weaponised Stigma: Emerging Research and future priorities which brought together academics, practitioners and the public to discuss these key issues. I presented work from my Wellcome Trust research looking at stigma and how this relates to health inequalities amongst people who use drugs. In this study I highlight how the weaponisation of stigma is harmful, negatively impacts physical and mental health, and inhibits health seeking behaviours for fear of being judged and marginalised by service providers and the wider public.

Joanne McGrath discussed her NIHR funded research into women living with multiple disadvantage and complex needs and how they access services. In this talk she highlighted how escalating problems around homelessness, stigma and deteriorating physical and mental health have a cumulative impact in women’s lives.

Our ‘expert by experience’, Margaret Ogden, shared moving insights into the effects of stigma on her own life and how her mental health was harmed as a result.

Later, Mark Adley discussed his Doctoral work (which is funded by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC)) and his recently published paper which explores stigma within-groups towards people who use the drug Spice. In this talk, Mark showed how intersections of identity mattered and how increased contact with people who used Spice helped to reduce levels of stigma. He highlighted the role of education programmes within service provision to help draw attention to the harms arising out of stigma and how practitioners might mitigate these effects.

This event was also an opportunity to launch our new Palgrave edited collection Drugs, Identity and Stigma (Addison, McGovern and McGovern, 2022). Our book calls attention to the impact of stigma experienced by people who use illicit drugs, and through this we show that stigma is powerful: it can do untold harm to a person and place with longstanding effects. Through an exploration of themes of inequality, power, and feeling ‘out of place’ in neoliberal times, this collection focuses on how stigma is negotiated, resisted and absorbed by people who use drugs. Dr Kelly Stockdale, a contributor to the book, spoke at our Fuse event and shared insights from our research into the challenges of navigating a custodial environments (prison and police) and the impacts of stigma from the point of view of people who use novel psychoactive substances (NPS). Collectively, our work in this area brings together a range of frameworks and data and draws attention to the damaging effects stigma can have on health inequalities, recovery, mental health, recidivism, and social inclusion.

Our knowledge and understanding of the harms that stigma does to health and wellbeing is still growing – as such, it is critical that developing stigma research becomes a priority in future inequalities research agendas, against a backdrop of political and economic crises. Whilst the social determinants of health are often tangible and measurable, providing the much-needed evidence base to tackle widening health inequalities, it is imperative that we think differently and critically about how stigma operates. In my own research I have tried to show that stigma operates at a symbolic level meaning it is not possible to treat stigma as something which is material and objective, to say ‘here is stigma’ – we must think more deeply about stigma as inscribed with meaning that becomes apparent through its effect on and between people (see also Addison, McGovern and McGovern, 2022).

I called this blog ‘Stigma: Where’s the harm?’ to be a little provocative to you, reader – on the one hand, stigma is so normalised in our society that we forget to see it, so I encourage you to pause and reflect on where the harm resides – like a million little paper cuts, stigma is painful and gets under the skin doing very real harm. On the other hand, my question is also a call to action to understand how and why stigma is weaponised, and how it leads to social harm amongst under-heard and underserved people. It is my strong belief that this is vital work if we are to tackle and reduce widening health and social inequalities right now.  

 

References:

Addison, M. (forthcoming, March 2023) ‘Framing Stigma as an Avoidable Social Harm that Widens Inequality’ in Emery, J., Powell, R., and Crookes, L. (eds.) The Sociological Review Special Issue

ADDISON, M., MCGOVERN, W. & MCGOVERN, R. E. (eds.) (2022) Drugs, Identity and Stigma, Houndsmill, Basingstoke and Hampshire, Palgrave Macmillan.

ADLEY, M., ATKINSON, A. M. & SUMNALL, H. R. (2022). Including the multiply excluded: a mixed methods study exploring intragroup stigma towards people who use synthetic cannabinoid receptor agonists. Drugs: Education, Prevention and Policy. DOI: 10.1080/09687637.2022.2025766

GOFFMAN, E. (1990) Stigma: Notes on theManagement of Spoiled Identity, London, Penguin Books

GOFFMAN, E. (1961) Asylums: Essays on the Condition of the Social Situation of Mental Patients and Other Inmates, London, Penguin Books

SCAMBLER, G. (2018). ‘Heaping blame of shame: 'Weaponising stigma' for neoliberal times’. The Sociological Review Monograph, 66, 766 - 782.

SINGH, S. (2019) available at: https://samiasingh.com/

TYLER, I. (2020). Stigma, The Machinery of Inequality, London, Zed Books.

Images:

1) Artwork by Samia Singh, https://samiasingh.com @samiasingh_art

2) Book: Drugs, Identity and Stigma, © 2022 Springer Nature Switzerland AG. Part of Springer Nature, ISBN : 978-3-030-98285-0, https://link.springer.com/book/10.1007/978-3-030-98286-7#about-this-book

Media representations of disabled people

Posted by Laura Navin, Health and Social Care student, Northumbria University

Picture by Laura Navin

Negative media representations of disabled people still exist in society and this needs to be addressed. I have dyspraxia which is a learning difficulty, and I sometimes struggle with my co-ordination, communication, processing and speed but it has not stopped me from achieving my goals!

In the media, disability tends to be portrayed through a medical or deficit model, with disabled people often treated as pathetic.^1,2,3 TV charity shows such as Children in Need encourage pity for disabled people² and people with disabilities are still seen as “the heavy burden of care”; “the helpless victim”.³ Yet even when well-meaning, encouraging pity is discriminatory as it creates stereotypical and negative assumptions about disabled people². These negative representations can decrease a disabled person’s self-esteem and make them feel like they are not part of society.^1,4

The issue is heightened by the absence of disabled people and their voices within mainstream media which might help to reclaim the narrative and counter negative stereotypes. As Caroline Casey, founder of The Valuable 500, a global movement putting disability on the business leadership agenda, has suggested “from daytime TV to adverts on social media, to the articles which publications run, representation and visibility of persons with disabilities simply does not reflect our society”. This was brought to light recently for example, when Sia’s decision to cast a neurotypical actress in the role of an autistic female protagonist in her upcoming film was widely criticised.

There are more positive portrayals of disability in the media however. Harry Potter star, Daniel Radcliffe has dyspraxia and acted as an inspiration to many when saying, “do not let it stop you. It has never held me back.”. In 2018, Lee Ridley from the North East won Britain’s Got Talent and in 2021, EastEnders star Rose Ayling-Ellis became the first deaf contestant on Strictly Come Dancing. Even these more positive representations are emblematic of the failure to represent disabled people as everyday, ordinary citizens however. As Lee Ridley claims, “Our government has a very weird relationship with disabled people. We are either seen as superhuman or as some sort of burden”.

Portrayals of disabled people as a burden on society have been shown throughout both austerity and the Coronavirus pandemic. Disabled people have been mocked as ‘scroungers’ in television shows and newspapers, with arguments that incapacity benefit had become a ‘lifestyle choice’ for the lazy, and that a disability benefit crisis was responsible for the UK economic crash resulting in the disproportionate targeting of disabled people within austerity measures.^5,6 Covid has been argued to be one of the biggest media outbreaks medicalising disabled people.^1,7 During the pandemic, disabled people were seen as ‘vulnerable’ and had to isolate from society.^5,8 ‘Vulnerable’ is a label that is often rejected by people with disabilities and its adoption does not portray the importance of disabled people’s rights and viewpoints.⁹ Labels such as ‘vulnerable’ or ‘immunocompromised’ when used to explain differential susceptibility to illness have also been argued to result in an unreasonable, unpleasant message about the value of disabled people’s lives. The sunflower lanyard which could be worn by disabled people to show they were exempt from wearing face masks helped in some ways to increase disability awareness and create more understanding, support and respect towards disabled people. However, this is another form of labelling, and not all disabled people want to identify their disability to the world. Greater understanding and training on disability ethics is urgently needed to avoid this sort of discrimination and support disabled rights more systemically.^9,10

 

It is also important that disabled voices are heard in society and that the media represents disabled people in a more positive light. Sometimes when I tell people about my dyspraxia they feel pity for me, but this is not what I want. I am telling my story to inspire others, not create sympathy, so please do not feel sad for me, feel happy for me! I have succeeded in my academic studies and graduated from university with second-class honours as a student with dyspraxia. I have been involved in podcasts and dissertation writing to raise my voice as a disabled person and in doing so I hope to give others the confidence to do the same. I am now studying for a postgraduate certificate in education (PGCE) to teach health and social care. I hope to continue to raise my voice and to inspire others.

Part of our Fuse blog Student Series

The Fuse blog Student Series showcases posts by students who have been challenged to write a blog as part of their studies at one of the universities in the Fuse collaboration, the NIHR School for Public Health Research, or perhaps further afield. The authors may be new to blogging and we hope to provide a 'safe space' for the students to explore their subject and find their voice in the world of public health research.

The views and opinions expressed by the author are those of the author and do not necessarily reflect those of Northumbria University or Fuse, the Centre for Translational Research in Public Health.

References

1) Cameron, C. (2014) Disability Studies: A student’s guide. London: SAGE Publications Ltd.

2) Barnes, C. (1992) Disabling imagery and the media: an exploration of the principles for media representations of disabled people. Halifax, England: The British Council of Organisations and Disabled People and Ryburn Publishing Limited.

3) Goethals, T. et al. (2020) ‘I am not your metaphor: frames and counter-frames in the representation of disability’, Disability & Society, 12 (1), pp.1-19. DOI: https://doi.org/10.1080/09687599.2020.1836478.

4) Casey, C. (2020) ‘Where all the disabled people on screen? We must increase representation or risk reinforcing damaging stereotypes’, Independent, 1 December. Available at: Where are all the disabled people on screen? We must increase representation or risk reinforcing damaging stereotypes | The Independent (Accessed: 22 March 2022).

5) Ryan, F. (2019) Crippled: austerity and the demonization of disabled people. London: Verso.

6) Briant, E. et al. (2013) ‘Reporting disability in the age of austerity: the changing face of media representation of disability and disabled people in the United Kingdom and the creation of new ‘folk devils’, Disability & Society, 28 (6), pp.874-889. DOI: 10.1080/09687599.2013.813837.

7) Shakespeare, T. et al. (2021) ‘Triple jeopardy: disabled people and the COVID-19 pandemic’, The Lancet, 397(10282), pp.1331-1333. DOI: https://doi.org/10.1016/S0140-6736(21)00625-5.

8) Courtenay, K. and Perera, B. (2020) ‘COVID-19 and people with intellectual disability: impacts of a pandemic’, Irish Journal of Psychological Medicine, 37, pp.231-236. DOI: 10.1017/ipm.2020.45.

9) Singh, S. (2020) ‘Disability ethics in the coronavirus crisis’, Journal of Family Medicine and Primary Care, 9 (5), pp.2167-2171. DOI: 10.4103/jfmpc.jfmpc_588_20.

10) McLean, S. and Williamson, L. (2007) Impairment and disability: Law and ethics at the beginning and end of life. Oxon: Routledge-Cavendish.