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 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
Would a biological
explanation stop this headline
• Oct 7 2013
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)
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
Total number of uses of the 1983 Mental Health Act 2007-2009
(compulsory detentions in hospital and supervised community
treatment orders issued)
54000
52851
52000
50000
48000
46000
44000
42000
40000
46677
44093
50707
50182
4107
3834
46600
46348
2009-2010
2010-2011
4220
Number of Supervised
Community Treatment
Orders Issued
2134
44093
44543
2007-2008
2008-2009
48631
38000
Number of detentions in
hospital under the Mental
Health Act
2011-2012
Number of people compulsorily detained in hospital or subject to
Supervised Community Treatment Orders at March 31st
25000
20000
15000
17828
19947
20938
3325
4291
22267
4764
15181
1755
15181
16073
16622
16647
17503
2007-2008
2008-2009
2009-2010
2010-2011
2011-2012
10000
5000
0
Number of people
subject to Supervised
Community Treatment
Orders at 31st March
Number of people
detained in hospital
under the Mental Health
Act at 31st March
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 cycle
1. 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 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
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 2
ways, 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
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www.disabilityrightsuk.org
liz.sayce@disabilityrightsuk.org
All-party Parliamentary Group on Disability
Publications: Disability Rights Handbook, Taking Control
of Employment Support….
• Leadership programmes