Fighting Shadows : Self-Stigma and Mental Illness Whawhai Atu te Whakamā Hihira By Debbie Peterson, Alex Barnes, Chlo

1. Fighting Shadows: Self-Stigma and Mental Illness Whawhai Atu te Whakamā Hihira By Debbie Peterson, Alex Barnes, ChloēDuncan Mental Health Foundation of New Zealand

2. Fighting Shadows: Presentation Outline • Research objectives • Research methods • Findings • What the findings mean • Recommendations • Group discussion points • He Mihi – Acknowledgements • Contact details

3. 1. Research Objectives • Explore the issues of self-stigma from the perspective of people with experience of mental illness • What are the causes and effects of self-stigma? • How can people combat self-stigma amongst people with experience of mental illness?

4. 2. Research Methods • Reference group formed at the end of 2006 • Two primary research methods: • Literature review • Facilitated focus groups • 11 groups, 76 people • General (x4), Māori (x2), Pasifika (x1), Chinese (x1), Refugee background (x1), Young people (x1).

5. 2. Research methods: Unique aspects • First type of research focussed on self-stigma in Aotearoa/NZ • Participants all had experience of mental illness – included current service users and people working in services • Refugee focus group included trained interpreters

6. 2. Research Methods: Self-stigma definitions • Two definitions provided for groups to discuss: • Negative thoughts or feelings towards yourself based on the fact that you have a mental illness • Self belief in negative stereotypes that have become linked to the experience of mental illness.

7. 3. Findings: What self-stigma means to people… • Over 20 characteristics identified • Each characteristic connected to one another… • Being ‘other’, ‘not normal’, ‘withdrawal’, ‘social isolation’, ‘not good enough’, ‘no recovery’, ‘reinforcing stereotypes’, ‘negative self-dialogue’, ‘self-doubt’, ‘blaming self’, ‘suicidal thoughts’, ‘insecurity’, ‘fear of discrimination’, ‘trying hard…’

8. 3. Findings: Effect on people’s lives • Being ‘other’ • Social withdrawal, exclusion and isolation • Self-doubt • Negative family/whānau relationships • Less entitled than others

9. 3. Findings: When people first experienced self-stigma • Using mental health services and diagnosis • Feelings of difference – being ‘other’ from a young age • Discrimination • Negative experiences • Experiences of violence and abuse

10. 3. Findings: Where self-stigma comes from • Social and institutional discrimination – health system, family/whānau, and employment • Public stereotypes • The media • Conforming

11. 3. Findings: What makes self-stigma worse? • Discrimination • Attitudes and behaviour • Medication

12. 3. Findings: What helps, what advice would you give to others? • Transforming self-dialogue: negative to positive • Using positive affirmations • Self-acceptance and disclosure • Peer support • Developing strategies for wellbeing • Strength through identity and action.

13. 4. What the findings mean • Diagnosis: People are especially vulnerable to self-stigma at first time of diagnosis • Mental Health Services: Important role in promoting and reinforcing recovery plans • Medication: Medication needs to be balanced alongside exercise, diet, routines and social connections • Difference and social isolation: Self-stigma can predate recognised mental illness. Important to help people overcome their fears of failure through self-care, role models and advocacy.

14. 4. What the findings mean • Discrimination: A major trigger of self-stigma. This can come from mental health services, racist attitudes, friends and family/whānau, employment experiences: “what you do makes the difference” • Family: Vital component in combating and/ortriggering self-stigma • Media: Can contribute to negative stereotypes – “you’re hopeless and a looney” “you can’t cope” – such myths can become internalised.

15. 4. What the findings mean • People’s own attitudes/behaviours: Buying into negative stereotypes results in people believing they are less entitled than others • Dealing with self-stigma: Need to create supportive and positive cultural and family environments - these are vital to the recovery process and people’s safe disclosure • Positive aspects of self-stigma: Finding ways of overcoming self-stigma may lead to a desire to help others in their journeys, create a better sense of self, and spark involvement in the mental health consumer movement.

16. 4. What the findings mean: Facilitator Reflections • Chinese: How do Western notions of self-stigma relate to Chinese culture? • Pasifika: Further research that is Pasifika-orientated is needed into how self-stigma effects Pasifika communities, particularly family relationships. • Young People: Identified a gap in recovery models being used in services, and inaccessible talking therapies. Need for more key anti-discrimination messages in schools, media and families. • Refugees: Further research needed on how to build and integrate more traditional supports – family, friends, spiritual support, traditional medicines – into general services. • Tangata Whaiora/Māori: Importance of adhering to tikanga Māori in research practice. • NZ European/Pākehā/General: Are people who are recovery focussed better able to understand self-stigma than those who are not (or vice versa)? More understanding needed on how experiences of abuse impact on their self-stigma.

17. 4. What the findings mean: A new definition of stigma and discrimination • “Something wrong with me/you, that won’t change, meaning I’m/you’re less than other people, and less entitled than other people, therefore I/we…”

18. “Something wrong with me/you” Difference Self/others “That won’t change” “Therefore I/we…” Inevitability / Unchangeability Self/others Discrimination Self/others “And less entitled than other people” “Meaning I’m/you’re less than other people” Devaluation Self/others Comparison Self/others 4. What the findings mean: A new model of stigma and discrimination Celebrating difference Disclosure Recovery oriented practices Challenging attitudes & behaviour Empowerment Affirming human rights Recognising contribution of mental illness Positive role models Peer support Leadership

19. 5. Recommendations • Recognise the contribution of mental illness and foster leadership among people with experience of mental illness • Celebrate and accept difference • Affirm human rights • Encourage disclosure

20. 5. Recommendations 5. Encourage recovery-oriented practices 6. Encourage empowerment 7. Support peer support services 8. Challenge attitudes and behaviour

21. 6. Group discussion points • In what ways do you believe addressing self-stigma promotes the vision of Te Mana Whakahaere – enabling people to increase control over their health and its determinants? 2. How do you think the circuit breakers contained in the new model of stigma and discrimination could be applied in your work-practice and/or by your organisation?

22. 6. He mihi - Acknowledgements • Participants • Facilitators and the organisers of the focus groups • Reference group • MHF staff • Ministry of Health • Johnny Matteson and Matua Rawiri Wharemate for the title.

23. 7. Contact details For additional copies of the report: Mental Health Foundation PO Box 10051, Dominion Road, Auckland. Ph: 09 3007010 Fax: 09 3007020 www.mentalhealth.org.nz For copies of this presentation: Like Minds, Like Mine National Project Team Mental Health Foundation Ph: 09 3007010 Email:likeminds@mentalhealth.org.nz