Why biological descriptions of mental illness don’t seem

to reduce stigma

Liz Sayce

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

Disability Rights UKDisabled 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

Would a biological explanation stop this headline• Oct 7 2013

The appeal of the argumentIntuitively 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)

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

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

'Psychiatric Asbos' were an error says key advisor

Former champion says public safety fears led to adoption of measures that seriously curtailed patients' freedoms

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?

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

• 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)

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

To change the cycle1. Mobilise power (of our leadership, policy,

law, finance, incentives)

2. Erode the line between ‘them and us’ – ‘our land is their land’.

3. Change negative associations with disability/ mental distress

4. Overcome separation (eg work, live together)

5. Improve life chances directly

6. Multi-level, multi-faceted approaches

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

Key resultsDiscrimination:• 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

Changing negative associations?

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’

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

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

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

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

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