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I know why the caged bird sings: Human rights issues in mental health systems

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Outlines consumer / survivor perspectives on common human rights issues in mental health systems, and outlines opportunities for change.

Presentation by Indigo Daya, VMIAC Human Rights Advisor, at The Mental Health Services (TheMHS) conference 2018.

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I know why the caged bird sings: Human rights issues in mental health systems

  1. 1. Indigo Daya Human Rights Advisor, VMIAC Adjunct Research Fellow, Swinburne University Honorary Research Fellow, University of Melbourne I know why the caged bird sings
  2. 2. A free bird leaps on the back of the wind and floats downstream till the current ends and dips his wing in the orange sun rays and dares to claim the sky. But a bird that stalks down his narrow cage can seldom see through his bars of rage his wings are clipped and his feet are tied so he opens his throat to sing. The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom. The free bird thinks of another breeze and the trade winds soft through the sighing trees and the fat worms waiting on a dawn bright lawn and he names the sky his own But a caged bird stands on the grave of dreams his shadow shouts on a nightmare scream his wings are clipped and his feet are tied so he opens his throat to sing. Inspiration for this talk Caged Bird Maya Angelou The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom.
  3. 3. Human rights in Australia … a poor record Image credit: The Guardian Image credit: The Conversation Image credit: 7.30 Report Image credit: Australian Human Rights Commission
  4. 4. Image credit: ABC News Image credit: 7.30 Report Imagecredit:ABCNews Imagecredit:DailyTelegraph Mental health is no different… despite the Burdekin report over 25 years ago
  5. 5. Image credit: ABC News Image credit: 7.30 Report Imagecredit:ABCNews Imagecredit:DailyTelegraph Mental health is no different… despite the Burdekin report over 25 years agoThese images wouldn’t normally be shown at a mental health conference because they might be distressing. But if you think it’s upsetting to look at, just imagine being on the receiving end. If you want to see less distressing images like this, please help change this system so we stop causing people distress. A message to workers & policy makers
  6. 6. I am calling on States to move away from traditional practices and thinking, and enable a long overdue shift to a rights-based approach…. Mental health policies and services are in crisis – not a crisis of chemical imbalances, but of power imbalances.’ United Nations Special Rapporteur on The Right to Health (2017) The United Nations has been strong in its criticism of mental health systems. But no-one seems to be listening.
  7. 7. Mental Health acts do NOT exist to give people rights Their main role is to make it lawful to breach fundamental rights Misunderstandings about human rights & mental health They give us a few lesser rights to try & make up for the loss
  8. 8. Misunderstandings about human rights & mental health Compulsory treatment does NOT uphold the ‘right to health’ It breaches the right to health because this right includes informed consent.
  9. 9. Human rights breaches in mental health services Occur as a matter of routine Hurt people Lack reasonable justification What can we do?
  10. 10. Human rights breaches are common practice
  11. 11. Human Rights from: International Covenant on Civil & Political Rights (1976) Right to recognition before the law Freedom from torture or cruel, inhuman or degrading treatment Right to life Freedom from slavery & forced labour Right to liberty & security of person No-one imprisoned for inability to fulfil a contract Humanity & dignity when deprived of liberty Freedom of movement & residence Right to a fair hearing Freedom from retrospective criminal laws Freedom from interference with privacy, home, family or reputation Freedom of thought, conscience and religion or belief Freedom of information, opinion & expression Prohibition of national, racial or religious hatred Freedom of association Right to respect for the family Right to name & nationality Freedom of assembly Right to take part in public affairs Rights of members of ethnic, linguistic & religious minorities Right to equality before the law
  12. 12. Rights that can be breached for people using mental health services (under ICCPR) Right to recognition before the law Freedom from torture or cruel, inhuman or degrading treatment Right to life Freedom from slavery & forced labour Right to liberty & security of person No-one imprisoned for inability to fulfil a contract Humanity & dignity when deprived of liberty Freedom of movement & residence Right to a fair hearing Freedom from retrospective criminal laws Freedom from interference with privacy, home, family or reputation Freedom of thought, conscience and religion or belief Freedom of information, opinion & expression Prohibition of national, racial or religious hatred Freedom of association Right to respect for the family Right to name & nationality Freedom of assembly Right to take part in public affairs Rights of members of ethnic, linguistic & religious minorities Right to equality before the law
  13. 13. Protection from torture & cruel, inhuman or degrading treatment Equality before the law without discrimination Right to life Right to liberty & security Equal recognition before the law & legal capacity Freedom from exploitation, violence & abuse Right to physical & mental integrity Freedom of movement & nationality Right to participate in cultural life Right to health Right to work Right to adequate standard of living Right to participate in public life Right to live in the community Respect for privacy Freedom of expression & opinion Respect for home & family Right to education Human Rights from: Convention on the Rights of Persons with Disability (2006)
  14. 14. Protection from torture & cruel, inhuman or degrading treatment Equality before the law without discrimination Right to life Right to liberty & security Equal recognition before the law & legal capacity Freedom from exploitation, violence & abuse Right to physical & mental integrity Freedom of movement & nationality Right to participate in cultural life Right to health Right to work Right to adequate standard of living Right to participate in public life Right to live in the community Respect for privacy Freedom of expression & opinion Respect for home & family Right to education Rights that can be breached for people using mental health services (under CRPD)
  15. 15. 1. Being subject to the Mental Health Act 2. Being treated less favourably than non-mental health patients 3. Lower standards of services or facilities 4. Compulsory detention 5. Locked units 6. Denial of leave from hospital 7. Seclusion 8. No access to clean clothes 9. Physical restraint 10. Mechanical restraint 11. Chemical restraint 12. Body searches, strip searches 13. Inaccessible toilets 14. No toilets in seclusion 15. Lack of privacy for toilet and bathroom use 16. Being prevented from observing your religious practices while at a service 17. Denied access to outdoors/sunlight 18. Punitive and/or humiliation by staff 19. No access to less restrictive treatments 20. Denying visits 21. Being diagnosed with mental illness based only on your thoughts, beliefs or spirituality. 22. Having your mobile phone confiscated 23. No access to privacy while using phones 24. Information not accessible or not provided 25. Being diagnosed with mental illness, or deprived of choice, because of your cultural beliefs. 26. Being prevented from cultural practices while in services. 27. Having to appeal compulsory treatment at the Mental Health Tribunal instead of an independent and open court. 28. Being given sedating medication just before a Tribunal hearing. 29. Not being given notice of a Tribunal hearing, or access to your notes before a hearing. 30. No access to a lawyer 31. No access to an advocate 32. Denied access to service 33. Assaulted by security guards 34. Ignoring requests for help 35. Not responding to serious side effects 36. Being forced to reside in a service or facility not of your choosing. 37. Advance statement ignored 38. Compulsory treatment 39. Not provided support to make own decisions 40. Not told about your rights 41. Undue influence / coercion 42. Not provided complete information about treatment side effects and risks 43. Not being given adequate time to give informed consent 44. Failure to respond to your physical health concerns with appropriate physical health assessments and treatments 45. Being physically or sexually assaulted, or harassed, within services — by staff or other patients 46. Not being believed after sexual assault 47. Not allowed to lock bedroom door 48. No cognitive assessment with ECT 49. Being harmed by the health service, including physical harm, mental harm, emotional harm and spiritual harm. 50. Breaching privacy by contacting people you don’t want told These are just some of the human rights issues in mental health services we’re asked to address at VMIAC.
  16. 16. 1. Being subject to the Mental Health Act 2. Being treated less favourably than non-mental health patients 3. Lower standards of services or facilities 4. Compulsory detention 5. Locked units 6. Denial of leave from hospital 7. Seclusion 8. No access to clean clothes 9. Physical restraint 10. Mechanical restraint 11. Chemical restraint 12. Body searches, strip searches 13. Inaccessible toilets 14. No toilets in seclusion 15. Lack of privacy for toilet and bathroom use 16. Being prevented from observing your religious practices while at a service 17. Denied access to outdoors/sunlight 18. Punitive and/or humiliation by staff 19. No access to less restrictive treatments 20. Denying visits 21. Being diagnosed with mental illness based only on your thoughts, beliefs or spirituality. 22. Having your mobile phone confiscated 23. No access to privacy while using phones 24. Information not accessible or not provided 25. Being diagnosed with mental illness, or deprived of choice, because of your cultural beliefs. 26. Being prevented from cultural practices while in services. 27. Having to appeal compulsory treatment at the Mental Health Tribunal instead of an independent and open court. 28. Being given sedating medication just before a Tribunal hearing. 29. Not being given notice of a Tribunal hearing, or access to your notes before a hearing. 30. No access to a lawyer 31. No access to an advocate 32. Denied access to service 33. Assaulted by security guards 34. Ignoring requests for help 35. Not responding to serious side effects 36. Being forced to reside in a service or facility not of your choosing. 37. Advance statement ignored 38. Compulsory treatment 39. Not provided support to make own decisions 40. Not told about your rights 41. Undue influence / coercion 42. Not provided complete information about treatment side effects and risks 43. Not being given adequate time to give informed consent 44. Failure to respond to your physical health concerns with appropriate physical health assessments and treatments 45. Being physically or sexually assaulted, or harassed, within services — by staff or other patients 46. Not being believed after sexual assault 47. Not allowed to lock bedroom door 48. No cognitive assessment with ECT 49. Being harmed by the health service, including physical harm, mental harm, emotional harm and spiritual harm. 50. Breaching privacy by contacting people you don’t want told
  17. 17. Human rights breaches are harmful, not neutral
  18. 18. Mental health services create mental and emotional distress
  19. 19. Like so many others, when I used mental health services, they only focused on the ‘obvious’ issues, like hearing voices and suicidality.
  20. 20. They never stopped to try and understand the real issues. This is a collage I made during an admission—and if anyone had asked me about it, I might have told them about my experience of child sexual abuse. So much of what hospital staff did to me replicated this abuse: being taken away from my home, detained, drugged, secluded. Eventually I found my recovery and healing outside of psychiatry services.
  21. 21. The residual effects of rights violations (after nine years) Nightmares Panic attacks Hiding unusual experiences Fear of seeking support
  22. 22. Human rights breaches are not reasonable
  23. 23. Mental health legislation seems to assume we have… • Reliable diagnoses of mental illness • Effective treatments that improve health • Real reductions in harm to self & others • A balanced range of unrestrictive and restrictive treatment options • Consumers are generally satisfied and have safe and good quality outcomes
  24. 24. What mental health acts make assumptions about Has a mental illness Requires treatment Prevention of harm No less restrictive option Improved health outcomes
  25. 25. Has a mental illness Diagnoses lack reliability & validity, they’re subjective and often change Requires treatment Unreliable treatment efficacy. At least a third of people are not helped by psychiatric treatments, possibly more. Some are harmed by treatment. Prevention of harm Violence by consumers is largely over-stated. Psychiatry can’t predict harm – risk assessments lack evidence. No less restrictive option There are many rights-based, less restrictive service options that remain unfunded. Social determinants & trauma? Community- based support? Coping skills? Counselling and therapy? Peer support? Living with experiences (eg HVA)? Peer-run crisis and support services? Improved health outcomes We die 20 years younger, in part from the side effects of forced treatments. The consumer movement is growing – our very existence is evidence that too many are hurt. Why mental health acts assumptions are unreasonable
  26. 26. So, what can we do?
  27. 27. Improve understanding of the mental & emotional impact of rights breaches Staff and policy makers need to hear our testimony much more. The impacts of harm must be made visible. And the she said I wondered if they knew that... I felt like… It started when… I wanted to… I couldn’t understandI just wish they’d… When I lose my rights, I lose my humanity When I lose my humanity, I have no mental health I was trying to ...
  28. 28. Embed human rights into quality & safety policy, practice and measures Rights Rights The child abuse royal commission showed us that harms in powerful institutions must be made visible before there is change. Measure breaches of rights – make it visible Create policies & practice that put rights first
  29. 29. Less sitting at ‘their’ table, more work setting our own tables. As consumers/survivors, let’s spend less time sitting at the system’s ‘table’ discussing ‘their’ agenda, and more time building our own spaces and agenda. If you don’t have a seat at the table, you’re probably on the menu (but you get no say in the menu) At our own table, we get to set the menu and the guest list
  30. 30. Bring the public with us—and for us
  31. 31. Create rights-based, genuinely healing, alternative pathways • Much more work with social determinants – particularly trauma ‘I didn’t need a mental health system, I needed a trauma system. And I didn’t need a health system—I needed a community.’ • Community-based supports • Coping skills • Diversify workforces – where is counselling and therapy? • Peer support • Living with experiences: hearing voices approach, living with suicide, emotional CPR • Peer-run services: crisis & long term, social enterprise
  32. 32. Learn more, and join us, check out our election campaign online www.vmiac.org.au/election-18
  33. 33. How will you take up the challenge? Facebook @TheVMIAC @IndigoDaya Twitter @VMIAC @IndigoDaya www.vmiac.org.au

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