1. Reflections
on the
consumer
-survivor
-ex-patient
movement
VMIAC Our People, Our Voice Conference 2017
@IndigoDaya

3. I may say things today that feel challenging.
We may have very different journeys, beliefs & priorities.
But let us sit together anyway, and share our reflections.

4. Some experiences…
• What drives me
• Consumer influence
• Working inside the system
Some reflections…
• On the inside or the outside?
• The challenges of diversity & unity
Where to for our
movement?

5. What drives YOU to be
part of this movement?
What drives me…

6. I went mad because of horrific
childhood trauma.
My healing came from doing
the opposite of what the
doctors tried to force on me.
The system I turned to
for help made
everything worse.

7. Hard facts that break my heart
and remind me that …
• If I know about profound injustice
• And I can do something, anything,
about that injustice
• Then I must try…

8. Trauma is the most prevalent experience for us
(and the least understood or addressed)
Of people who use public clinical mental health services:
Sexual or
physical abuse
as children
Sexual or
physical assault
as adults
Goodman, L.A., Salyers, M.P., Mueser, K.T., Rosenberg, S.D., Swartz, M., Essock, S.M., Osher, F.C., Butterfield,
M.I., and Swanson, J. (2001). Recent victimization in women and men with severe mental illness: prevalence
and correlates. Journal of traumatic stress, 14:4, 615:632.
Read, J., Fink, P.J., Rudegeair, T., Felitti, V., and Whitfield, C.L. (2008). Child Maltreatment and Psychosis: A
Return to a Genuinely Integrated Bio-Psycho-Social Model. Clinical Schizophrenia & Related Psychoses.

9. Experiencing multiple
childhood traumas appears
to give approximately the
same risk of developing
psychosis as smoking does for
developing lung cancer.
(Bentall, cited in Slade & Longden, 2015)
Slade, M., and Longden, E. (2015). Empirical evidence about recovery and mental health. BMC
Psychiatry, 15, 285. doi: 10.1186/s12888-015-0678-4

10. Failure to acknowledge the
reality of trauma and abuse
in the lives of children, and the long-
term impact this can have in the lives of
adults, is one of the most significant
clinical and moral deficits of current
mental health approaches.
(Prof Louise Newman cited in Kezelman &
Stavropoulos, 2012)
Kezelman, C. and Stavropoulos, P. (2012). Practice guidelines for the treatment of complex trauma
and trauma informed care and service delivery. Australia: Adults Surviving Child Abuse (ASCA).

11. How common is the experience of
ineffective or harmful treatment?
63% of Australians diagnosed with psychosis do
not have good ‘recovery’ outcomes
Morgan VA, Waterreus A, Jablensky A, Mackinnon A, McGrath JJ, Carr V, et al. (2011). People living with
psychotic illness 2010. Canberra: Australian Government Department of Health and Ageing.
“Good” recovery means minimal or no impairment – relates to clinical definitions of recovery.
Single episode, recovery
Multiple episodes, good recovery in
between
Multiple episodes, partial recovery in
between
Continuous chronic unwellness
Continuous chronic unwellness with
deterioration

12. Which human
rights do
consumers
commonly
lose?

13. In order to
prevent one
assault by a
person
diagnosed with
schizophrenia,
304 people
have to be
forcibly
detained &
treated.
Scholten, M., Gather, J., & Vollmann, J. (2017). Psychiatric risk assessment, involuntary treatment, and
discrimination of persons with mental disorder. The 10th European Congress on Violence in Clinical Psychiatry.

14. In order to
prevent one
homicide by a
person
diagnosed with
schizophrenia,
4,286 people
have to be
forcibly
detained &
treated.
Scholten, M., Gather, J., & Vollmann, J. (2017). Psychiatric risk assessment, involuntary treatment, and
discrimination of persons with mental disorder. The 10th European Congress on Violence in Clinical Psychiatry.

16. Working inside the system

17. Barriers for consumer workers
Common roadblocks
• Common statements, acts & processes
that silence our voice
Emotional safety barriers
• Many types
• Undermine us through emotional harm
• Often invisible to others
• Impact can be pathologised and spawn
more barriers
Organisational / structural barriers
• Many types
• All based in power

18. Common roadblocks that silence consumers
• Sorry but that’s a minority view
• I’d love to, but we don’t have time
• That’s a subjective view
• But what about… / that’s like when…
• Is that representative of all
consumers?
• Where’s your evidence?
• That’s not reasonable
• You don’t understand
• What current consumers say is more
relevant
• The consumers I know don’t say that
• You can’t say that here

19. Emotional safety barriers for
consumer workers

20. Isolation

21. ‘Sanism’
Discrimination

22. Trauma

25. Pathologisation

26. Impossible
choices

27. Hostility
Bullying

28. Hiding
emotional
impacts

29. This is NOT an acceptable response
If it’s so unsafe, maybe we
shouldn’t employ
consumers here.

30. This IS an acceptable response
If it’s so unsafe, maybe we
should make it safe.

31. This is also NOT an acceptable response
But what you’re asking is too
hard. It will never happen
here.

32. Once people thought it was too hard to make
workplaces safe & respectful for women.

33. • Pay inequality
• Lack of formal power
• Under-resourced
• Lack of role clarity
• Colonisation of our practice and principles
• Lack of understanding about how & why we
work
• Working with us is optional, not authorised
• We’re invited at the end, not the beginning
• We contribute to the work of others rather
than lead our own
Organisational & structural barriers that create
tokenism for consumer roles

34. Consumer influence… why don’t
these systems really listen to us?

35. Consumers
Mental
health
sector
The customer The provider
Mental and
emotional
distress
The problem
The aim
Recovery &
Health
I used to think this was how we were
positioned in the system

36. General
public
Mental
health
sector
The customer The provider
The aim
Public safety &
sound economy
The problem
Consumers
(violence)
I’ve come to understand that this is a more accurate reality. We
are NOT seen as the customer. We are the PROBLEM.

37. Society is still drenched in beliefs that we are
violent and dangerous…

40. The consumer movement is
the smallest and least
powerful of all influencers.

41. Who IS influential?

42. Influencers
• Economy
• General public
• Media
• Professional bodies
• Psychiatrists
• Nursing unions
• Sector organisations
• Justice sector, emergency services
• Carers
• Not knowing
Often we talk
about BigPharma,
but there are
actually many
complex
influencers. They
ALL have more
power than us.

43. Where is the best place to
influence change?
On the inside or on the outside?

44. If you don’t have a seat
at the table, you’re
probably on the menu.

45. The master’s tools
will never dismantle
the master’s house.
Audre Lorde

46. Inside Outside

47. Inside
Knowledge
Some influence
Paid
Restricted voice
Still ‘the other’
Unsafe workplaces
Others set agenda
Risk of drift /
colonisation
Outside
Free voice
Ethical alignment
Set own agenda
Lacking info,
contacts
No – low pay
Less respect
?

48. ?

49. Building our
own table.

50. Diversity & unity.

51. Holding
true to peer
work
‘What
consumers
want is …’
United we stand,
divided we fall.
Aesop.

52. A matrix for
understanding
different consumer
priorities

53. Different experiences of treatment
Helpful
treatment
Harmful
treatment
• Diagnosis is helpful
• Medication or ECT
is helpful
• Leave feeling better
• Diagnosis doesn’t
make sense / feels
disempowering
• Medication or ECT
doesn’t help – or
make things worse
• No more helpful
options provided
• Leave feeling worse

54. Different experiences of services
Safe servicesHarmful services
• Seclusion
• Restraint, including chemical
• Forced detention & treatment
• Coercion
• Harassment, violence, assault
• Poor prognosis > lost hope
• Human rights upheld
• Beliefs respected
• Physically & emotionally safe
• Chance to learn & find power
• Motivated, hopeful, supported
• Disabling side effects
• Disrespect, lost dignity
• Not being believed
• Discriminatory attitudes
• Fear, anger, despair, shame
• Compassion, respect, dignity
• Self-determination
• Treatment options
• Trauma recognised
& addressed
• Choices upheld

55. Different sets of experiences
Helpful
treatment
Harmful
treatment
Safe servicesHarmful services
?
??
?

56. Different priorities
• Human rights
• Society is broken, not us
(‘Recovery in the bin’)
• Mad Pride
• Respect & compassion
• Gender safety
• Diversity inclusiveness
• Recovery
• Address trauma &
spirituality
• Therapy, counselling,
peer support
• Access & info
• Continuity of care
• Discrimination
Helpful
treatment
Harmful
treatment
Safe servicesHarmful services

59. Which
consumers?
Which
worldview?

60. So, what can we do?
Having Diversity & Finding Unity
Being Inside & Outside
Being the Problem & the Customer
Safety & Barriers in our work

61. On the outside…
• How do we build our own table & menu?
• Priority issues?
• What types of power can we use?
• How do we resource ourselves?
• How do we move from being the problem to the
customer?
• Attitudes & myths about madness, violence, medical models
of treatment
• Lack of awareness about trauma and rights breaches
• How do we strengthen our numbers, diversity & unity?
• How do we stay connected with those on the ‘inside’?
• How can we consolidate and distribute knowledge?

62. On the inside
• How do we stay safe & sustain ourselves?
• How do we protect the intent of our roles and
prevent colonisation or drift?
• How can we increase our influence on agendas,
priorities, awareness and change?
• What do we need to learn on the inside and how do we
pass it on?
• How can we hold diversity, unity and integrity?
• When should we say ‘no’?
• How can we enable more and stronger allies?

63. We are worth
this struggle, but
we have much
work to do.

64. Work
indigo.daya@dhhs.vic.gov.au
Social media
Indigo Daya
@IndigoDaya
Indigo Daya
The blog that shouldn’t
be written
www.indigodaya.com