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TEMPLATE DESIGN © empowerment disclosure group discrimination Identification neglect emergency madness fail madness lead blame Power violence employment menta l inclusion reject self-help fear justice respect exclusion caring informed consent HOPE labeling NNMH failure contact jailed stereotypes belonging hurt WORTHY secrecy health community loneliness human rights loss support incompetent RAP pessimism disclosure acceptance self-stigma dignity blame recovery shame fractured choice imprison income self-efficacy contamination reframing defeat public identify hopeless acceptance meaning media belonging prejudice support dignity avoidance attitudes useless power hurt social sting impulsive belong ignorance accept myth enforce identify exclude association outsider LEADERSHIP different sharing quality of life rejection WORK fragile citizen ignorance purpose harm peers suicide knowledge negative education survivor indifference experiential expertise lose consumers Empowerment, Disclosure & Group Identification The consumer role in reducing self-stigma, discrimination & enhancing social inclusion Impacts Every Area of Life Stigma & Discrimination Prepared by: Neasa Martin, Constance McKnight & Joan Edwards Karmazyn for the NNMH Stigma is real, damaging & pervasive. More painful than mental-ill health. It continues long after symptoms resolve. Stigma takes many forms: Public stigma: is the harm caused when the public endorses the prejudice & discrimination of mental illness. Courtesy stigma: is the devaluation experienced by caregivers & professionals. Discrimination: is the external behaviour & institutional arrangements that deny people rights or limit their social inclusion. Social exclusion: Unemployment, Education, persistent poverty. Social isolation, Friendships, withdrawal of family. Negative portrayal by media (blame, violent, incompetent, impulsive). Harm to families. Loss of human rights: Use of seclusion, restraint &, involuntary treatment. Denial of housing, insurance, public office, mortgages, loss of parental rights. Increased risk containment criminalization, re-institutionalization in prison. Policy & funding neglect by governments. Impact on health care: Pessimism & focus on limitations. Under funding of mental health services. Less choice & access to recovery/ rehab services. Poor medical care, chronic illness, lifespan ( 10 years). Self-stigma: is the harm caused when people internalize negative stereotypes impacting self-esteem & self-efficacy. Results in self-blame, feeling hopeless & helpless. Limits recovery & increases risk of suicide. Label avoidance: self-stigma leads to people avoiding labeling by not accessing mental health services. Who suffers from self-stigma? People who identify with their ‘diagnostic label’, are aware of & agree with stereotypes, those who fear disclosure, are socially isolated & fail to pursue work, housing, civic participation & entitlements. Those with high ‘disease awareness’ but lack a positive group identification. What protects people from self-stigma? Rejection of stereotypes & de-emphasizing diagnostic labels. Group identification, participation in the fellowship of peer- support/self-help. A commitment to recovery. Empowerment & righteous anger. Reframing experience positively. Finding meaning & purpose. Building self esteem & self-efficacy. Developing a sense of mastery. Self-stigma ‘circuit breakers’ By increasing visibility of people with mental health issues. Building peer support networks. Affirming human rights. Challenging negative attitudes & stereotypes. Promoting systemic changes reflecting recovery practices. Participating in public education activities. Self-disclosing to inspire others & give hope. Self-Stigma Diagnostic Labeling & Stigma “Illness like any other” does not work Framing mental illness as biologically based, genetically influenced & chemically mediated ‘disease’ of the brain increases pessimism regarding recovery, desire for social distance, tolerance for coercive treatment & public acceptance of the violation of people’s human rights. This approach does reduce “blame” and the public is more supportive of treatment. BUT they are also more fearful of people with mental illness who they see as having no control and are therefore more dangerous. This leads to rejection & social distance. There is less stigma when… Mental health problems are seen as part of our ‘shared humanity’ & an understandable consequence of life circumstances. When there is less emphasis placed on medications, hospitalization & medical treatment. Supports are provided in the ‘mainstream’ community. More public acceptance when government(s) fund treatment & services. Importance of Peer Support Three inter-related problems: 1) A lack of knowledge ignorance 2) Ignorance prejudice & negative emotions 3) Prejudice avoidance & discrimination Three-pronged solution: 1) Education (by consumers, about their experience - not illness, targeting the influential, emphasizing rights & promoting hope, recovery & inclusion) 2) Positive contact (with consumers who disabuse myths, between peers, & when there is a shared goal) 3) Protest (fighting inequities, demanding rights, fighting negative media, & seeking systemic changes) Need to focus on discrimination: Information alone does not change attitudes. Changing attitudes may not change behaviour or improved quality of life. Focusing on empowerment, rights & social inclusion DOES improve QOL. Work at a systems level with all stakeholders to improve policies, practices, laws & their enforcement. How is Stigma Formed / Stopped For Further Information Key Messages Research (although limited) confirms peer-support: Is highly valued by consumers who participate. Builds group identification & reduces self-stigma. Significantly reduces hospitalizations (number & duration), decreases symptom distress, use of emergency & other expensive medical services. Increases social contacts, builds supportive networks & enhances quality of life. Helps to re-frame distressing experiences positively. Normalizes the experience of mental ill-health. Supports disclosure & neutralizes self-stigma. Empowers people by participating in advocacy, education & by providing support to others. Supports recovery. Helps people learn self-management strategies, awareness of resources & how to navigate professionally run services. Participation in systemic advocacy strengthens self- efficacy, empowerment & promotes recovery. Consumer employment within mental health services reduces stigma & discrimination amongst health care providers. Peer-support identifies solutions & supports systemic change. Consumers hold stakeholders accountable. Consumer-led economic development initiatives affirms capacity to work & reduces pessimism re: recovery. Under Funding is Discriminatory Research reflects: Robust consumer leadership as an internationally recognized ‘best practice” in reducing discrimination. Peer support & group identification is critical to overcoming self-stigma & improving quality of life. Reducing self-stigma removes a barrier to pursuing treatment, work, friendships & enhances recovery. Peer-support is recognized in Canada & worldwide as a “best practice” in mental health service delivery. It works & is cost effectiveness. Consumer leadership drives systemic transformation & peer-support builds consumer leadership. In Canada peer-driven services are under-funded & devalued. This is systemic discrimination. National Network for Mental Health 55 King St. Suite 604 St Catharines, ON L2R 3H5 Toll Free: (888) Phone: (905) Fax: (905) Outcome of anti-discrimination programming MUST: Promote human rights including policies, practices & laws. All stakeholders work to remove systemic barriers. People are seen as citizens & not problems to be solved. Mental ill-health is framed as part of our shared humanity - NOT a disease of the brain. Focus on enhancing social inclusion & quality of life; Housing, employment, education & training, income security, safety, improved health & mental health, recovery-focused care, stop discrimination, supportive communities, access to mainstream services… Consumers MUST lead anti-discrimination programs: Because this reflects “best practice” & enhances success. They understand the issues & provide the army for battle. Funding of empowerment / support programs is critical: For the success of anti-discrimination programming. To reduce self-stigma, promote recovery & improve QOL. For achieving systemic change. Building a research evidence-base is essential but… Reflect consumer priorities in publicly funded research. Includes participatory-action & qualitative research design. Consumers are agents NOT objects in research delivery Knowledge is share in accessible & meaningful ways. Consumer-focused recovery is the heart of anti-stigma messaging and reform. “Those who do not have power over the stories that dominate their lives, power to retell them, rethink them, deconstruct them, joke about them, and change them… truly are powerless because they cannot think new thoughts.” Salman Rushdie
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