Presentations of stigma in CALD clients in Victoria: themes from critical reflective practice

Daniel Reeders B.A., LL.B. (Melb)

Senior Project Worker

Multicultural Health & Support Service

Centre for Culture, Ethnicity & Health

danielr@ceh.org.au | 03 9342 9713

About MHSS

• Statewide service working with African and Asian communities around blood-borne viruses and sexually transmitted infections (BBV/STI)

• A program of the Centre for Culture, Ethnicity and Health (www.ceh.org.au/mhss).

Acknowledgments & Disclosures

I am drawing on findings from projects funded by Victorian Government Department of Health, Gilead Sciences, Bristol-Myers Squibb, and the Cancer Council of Victoria.

Scope

• Written for relevance to positive services staff, focused on clients rather than communities

• Looking at stigma for migrants/refugees in Australia, quite different in countries of origin

• Not stating essential truths about other cultures; I’m sharing from my own learning process moving from positive health to CALD BBV, and my perspective is partial and relative – as much about Western health professional culture as any refugee or migrant cultural background.

what is stigma

Goffman (1963)• mark or attribute• deeply discrediting• particular social interaction

what is stigma

Link & Phelan (2001)

1. Labelling of differences

2. Stereotyping of those labelled

3. Categories allowing separation of us / them

4. Status loss, discrimination, unequal outcomes

5. Enabled by power relations

Parker & Aggleton (2003)• Stigma enables power relations & social order

what stigma is not

what stigma is not

“Our principal findings show, firstly, that moral or social stigmatisation does not in any simple way derive from fear, ignorance or inaccurate beliefs but that it is also established and continually reinforced by official campaigns addressing HIV/AIDS.” (Gausset et al, 2012)

• Stigma is not “just” anything.

stigma in Western culture

• Having HIV is a secret you choose to disclose• Stigma can be resisted by speaking up,

refusing to be silenced, ‘reclaiming’ identity, forming community within the category

• This implies stigma applies to one layer of identity, and it is changeable over time

stigma in Asian communities

“If someone was a carrier of such disease it would mean: be careful when you come near me as I am an outlaw. Therefore no one would want to be in such situation and deprived of all protection and rights.”

• Vietnamese man, quoted in McNally & Dutertre, 2006, p158.

stigma in Asian communities

“I am afraid that people will rang kiat me. Everyone is the same, and they think the same about the illness. It does not matter how many thousand people have HIV/AIDS within the populations of more than 60 millions, I would say that only zero percent will accept people living with HIV/AIDS.”

• “Pailin”, Thailand woman living with HIV, quoted in Liamputtong, Haritavorn & Kiatying-Angsulee 2009, p158.

relative differences

Compared to Western cultures, stigma in these quotes is• permanent• fundamental• contagious• paradigmatic

Closer to Goffman (1963) ‘spoiled identity’.

Takehome — the stakes are much higher for a CALD PLHIV contemplating disclosure.

sources & methods

Across our projects the same 7 themes co-occur when key informants, clinicians and support workers talk about CALD clients facing stigma. Projects include:• Double Trouble: CALD MSM sexual health• International Students’ Sexual & Reproductive Health

Needs Analysis• Cultures of Care in Emerging Communities• SRH Needs of Newly-Arrived Refugees• Hepatitis B is Family Business (campaign)

Methods were thematic and discourse analysis, triangulation of reflective practice & literature

“7S” model of stigma presentation

• Stigma • Shame• Silence• Secrecy• Stress• Sleeping problems• Somatisation

stigma(s)

Migrants and refugees are always dealing with multiple overlapping sources of stigma.

HIV stigma in countries of origin may be lower than it is in Australia, where it is always intensified by migrant and refugee stigmas, even for CALD people living without HIV.

shame

Shame is bodily and emotional but also social.

“Shame is the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.” (Brown, 2007)

silence

Silence refers to paralysis of all kinds of action, not just speech and other forms of expression.

“(Shame) produces a generalised silence because any topic could accidentally reveal the underlying premise – and through the suspicious inspection of every utterance produced by this fear, everything that is said comes to stand for, and be linked with, the hidden secret. It becomes a truth that is impossible not to express, so that silence becomes the only safe option.” (ISSRH report, forthcoming)

secrecy (or shiftiness)

This is a correlate of silence. To clinicians it can seem like the person is hiding something.

“Where our focus on confidentiality tries to address a simple, rational fear of onward disclosure, shame-induced silence is different – it is a loss of trust in your ability to control what you mean when you speak.” (ISSRH report)

stress, sleep, somatisation

• CALD clients living with stigma will be dealing with significant amounts of stress

• CALD clients in distress often present with sleeping problems or somatisation – what a Western patient might present in mental and emotional terms may be translated into a bodily malady, often stomach upset.

summary

Developing culturally competent accounts• In addition to the social and structural aspects

of stigma, CALD clients/patients challenge positive services to describe, recognise and understand the affective, expressive and bodily dimensions of stigma experience.

• The focus in Western postmodern cultural theory on the changeability of identity may lead us to underestimate the permanence and fundamentality of stigma in CALD communities; Goffman got it right with ‘spoiled identity’.

summary

Implications for service providers• “What’s the point of treatments? I can never

recover my position and relationships with the community.”

• Refusing referrals because, in our health system, you have to continually retell your story (and interpreters may register as an audience).

• Clients can become ‘clingy’ – but ongoing relationship with the same provider and small group strategies can be incredibly meaningful: acceptance and belonging.

contact details

For questions, references, copies of papers cited, please e-mail danielr@ceh.org.au