Why biological descriptions of mental illness don’t seem to reduce stigma

1. Why biological descriptions of mental illness don’t seem to reduce stigma Liz Sayce

2. Statistics and me • UK Fulfilling Potential evidence says 19% population covered by Equality Act definition of disability • Many go in and out of the experience of disability (only 2% are born with their impairment) ‘Their land is our land’ (Andrew McDonald) • Identity: only 24% consider ourselves ‘disabled’ (lowest in young people) Individuals and families are (increasingly) multiply affected: • Individuals with 3 or more impairments will rise by a third by 2018 • Almost half of disabled children live with a disabled parent • 15% of disabled people are ‘carers’ compared to 8% of non-disabled people My background: from mental health to wider disability and human rights

3. Disability Rights UK Disabled people leading change • Board composed of leaders with lived experience of mental and physical health ‘conditions’/disability: Disabled People’s Organisation (DPO) leaders, experts in communications, finance, business… • Formed Jan 2012, 3-way merger

4. Would a biological explanation stop this headline • Oct 7 2013

5. The appeal of the argument Intuitively there are attractions: • Parity of esteem between physical and mental ill-health: acquiring some of the relative positivity of heart disease, arthritis ….. • It’s not your fault – you’re born that way • It’s not the fault of the family’s nurture or lack of it (a relief to some families)

6. But would it stop: • Employment discrimination and the fear of being open: people with mental health problems are often open to no one at work, or only those with no power (a colleague – not HR or the boss) • Hate crime (Mind found a third of people affected told no one), harassment at work, supermarkets selling ‘psycho’ Halloween costumes • Unfair threats to liberty

7. Source: NHS Information Centre for Health and Social Care (2012) Inpatients formally detained in hospitals under the mental Health Act 1983, and patients subject to supervised community treatment, Annual figures, England, 2011/12, Health and Social Care Information Centre

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9. The case against • Naïve to think biological explanations of physical impairments stop discrimination: think of cancer, MS – hence we had to extend the Equality Act in 2005 • A disease of the brain - in particular - implies you can’t take responsibility. • Research shows this can make public think you are more – not less – dangerous and unpredictable • Might this mean employers are less likely to employ you, people less likely to see you as a capable parent? Might it be more daunting to be open about a mental health problem?

10. The evidence • Read et al (2006) review of international literature found biogenetic causes were positively related to perceptions of dangerousness and unpredictability and to desire for social distance • Phelan et al (2005) found emphasis on genetic explanations was associated in public with more recommendations for hospitalisation and more pessimism about outcomes of treatment • Phelan (2005) found genetic explanations increased the view siblings would be affected – and increased distance from the (unaffected) sibling esp regarding intimacy

11. Pescosolido et al (2010) found biological explanations increased public support for treatment but increased stigma/community rejection • Bruce Link: [the illness messages] ‘do not solve the problems of stereotyping and discrimination’. Acceptance of medical conceptions has increased, stereotypes have remained strong or grown stronger • The illness message may increase help seeking AND social distance/ discrimination • Contact – on at least equal term – does reduce desire for social distance and perceived dangerousness (eg Alexander and Link 2003, Boyd et al 2010)

12. What drives discrimination? • Distinguishing between and labelling human differences • Linking the labelled persons to undesirable characteristics • Separating ‘them’ from ‘us’ • Culminating in status loss and discrimination that lead to unequal outcomes or life chances • ‘Stigma is entirely dependent on social, economic and political power’ Link & Phelan 2001

13. To change the cycle • Mobilise power (of our leadership, policy, law, finance, incentives) • Erode the line between ‘them and us’ – ‘our land is their land’. • Change negative associations with disability/ mental distress • Overcome separation (eg work, live together) • Improve life chances directly • Multi-level, multi-faceted approaches

14. How are we doing? Drawing on Time to Change 2008-11: largest ever evaluation of an anti-stigma campaign. Special edition of British Journal of Psychiatry April 2013 And rights-based and social inclusion initiatives

17. Key results Discrimination: • 3% improvement in the numbers of people reporting no discrimination in their lives • Significant improvement: from friends, family, social life, being shunned. • No change from mental health or health staff, employers, benefits, housing, education etc • 11.5% drop in the average amount of discrimination experienced (but - sustained?) Employment: employers less likely to see employing people with MH problems as major risk. But no significant change in empl rate

18. Changing negative associations?

19. Change negative associations • Time to Change: increase in positive media stories - but no reduction in negative. Fewer on dangerousness, more on benefits • Do we agree what a ‘positive association’ is? UK still measures ‘it’s an illness like any other’ as a positive. Yet believing this increases the desire for social distance • TtC finds increase in employers reducing hours or workload as ‘reasonable adjustment’. Fulfilling Potential finds most significant discrimination is giving too little responsibility. Do they add up? • Disability Rights UK: disabled people identify the resilience, empathy, problem solving and other qualities we often bring to the workplace. And what we achieve with adjustments/support. • A social model of disability. Recognise the value of difference and tackle the barriers • ‘The challenges posed by my disability mean my colleagues see me as adaptable and resourceful’

20. Are we mobilising power? • Are anti-stigma campaigns led by people with lived experience? Sweden’s anti-stigma campaign ‘is not a campaign about people with psycho-social disabilities: it is run by a network [of people with lived experience]’. Results include every 2nd person who did not want someone with a mental health problem as a neighbour has changed their opinion • Time to Change: significant increase in media stories on MH promotion (to 125 tracked in 2011), not on injustice/justice (30 tracked 2011) • Employers said they didn’t know enough about the law. Is the fist in the velvet glove too soft? • Practical support to challenge injustice – eg third party hate crime reporting

21. Overcoming separation • Time to Change confirmed ‘contact’ can change attitudes (in specific circumstances) • Knowing someone with mental health problems predicted less stigmatising attitudes • They held mass contact events – eg sports, dance, music • Next to be more sustained, we could focus on ‘natural’ contact eg through school, college, work, community, religious orgs – rights to participate, inclusion via peer support • Mental health workers as champions - support change in millions of everyday interactions

22. Getting a life. Learning 2ways, disability and mental health

23. Implications • ‘An illness like any other’ is no magic bullet to challenge discrimination • It may encourage help seeking, dependence, discrimination and stigma for relatives • It shouldn’t be privileged in explanations to individuals or families (with multi-factorial issues different people will adopt different explanations • It should not be used in anti-discrimination work • Instead think Contribution, Contact, Power

24. Thank you • www.disabilityrightsuk.org • liz.sayce@disabilityrightsuk.org • All-party Parliamentary Group on Disability • Publications: Disability Rights Handbook, Taking Control of Employment Support…. • Leadership programmes