Maeve O’Neill Trudeau, IHSP Fellow 2009/2010

1. Maeve O’Neill Trudeau, IHSP Fellow 2009/2010 Helping Stigmatized PopulationsCommunity-Based Mental Health Services and Educational Prison Services in Mzuzu, Malawi

2. Malawi • One of the poorest countries in the world • GNI per Capita: US$ 160 (World Bank, 2006) • Below Poverty Line: 65.3% (UNDP, 2004) • Living under 2$ (PPP)/d: 90.4% (UNDP, 2009) • Adult Literacy rate: 64.6% (UNDP, 2009) • Rural population: 84.1% (UNDP, 2004) • 0.03% of health budget for mental health (SJOG, based on Malawi budget 2008) Sources: UNDP, "Human Development Indices - A statistical update 2008" Map: http://www.ip.wsu.edu/shirtoff/images/malawi-map2.gif

3. Background: Stigmatized Populations • Mentally disabled • Includes epilepsy, schizophrenia, Downs syndrome, cerebral palsy, congenital disorder afflictions • Deemed “The Ultimate Stigma” (Falk, 2001). • Hidden from the community or ostracized, tied to trees • Prisoners • Stigma includes: • Employment discrimination • Social outcasts • 11,000+ inmates in prison (more than double the national capacity) • 60% prison staff positions vacant • Budget allocations for the prison system were less than 20 percent of the stated need • Warden:prisoner ratio 1:17 (recommended ratio of 1:5) • (US Department of State, 2008 Human Rights Report: Malawi)

4. Methodology • Interview selection/Interviews • Semistructured • 75+ interviewed • 2/3 with translators into Tumbuka and Chewa • 2 translators used • Outreach • SJOG staff, beneficiaries, volunteers • Prison • Teachers, students, prison guards, SJOG staff, ex-prisoners, prisoners (not involved in school) • Participant observation • Annual reports from SJOG

5. St John of God (SJOG) • Community-Based Model of Mental Health Care based in Mzuzu (Northern Malawi), established 1994 • Founding Objective: • Provision of decentralized, integrated and community based system of mental health promotion and care, using a Primary Health Care vehicle • Population (disabled, disadvantaged) impacted through programs: 7633 people in 2008 • Services target: mentally ill (treatment, vocational training) and their families, prisoners, street children, rural poor (food, housing)

6. Outreach Clinics • 12 clinics, within a 50 km radius of urban centre • Medication delivered to patients living in these rural areas. • Usually treating for schizophrenia, epilepsy, depression • Full funding provided by SJOG, patients pay symbolic amounts to encourage sense of appropriation

7. Outreach Clinic attendance 2000-2007

8. Outreach clinics - outcomes • Patient success examples: • Being included in family activities such as farming, cooking, livestock tending • Getting married and having a family • No longer having seizures (strong witchcraft link) • “[I am] able to go and farm, make ridges, and have a garden.” - 23 year-old man suffering epilepsy previously attributed to a curse. • “The clinic has helped […] a lot because even all those people who thought maybe [their] disease had no cure, they are able to know that they are seeing their friends like this [better], they are able to know that maybe […] there is help, so they have also started coming to the clinic.” - elderly man treated for schizophrenia. • “There is a change in the way we conversate, the way I talk with my mother, before she was talking like maybe she’s angry with something whenever, but as of now with the changes, with the medication, she is better.” – daughter of epileptic mother who used to have seizures 1o times per month, now seizing once or less a month

9. Prison School • Prisoners with educated background teach other prisoners • Grades 5, 8, 10 and 12 taught • Approximately 30-40 students, 10 teachers • Exams written in prison • CIDA funding helped develop school in prison, now self-perpetuating • Possible to take national exams within prison, obtaining Malawian certificates • Provides escape from abysmal conditions in prison • Overcrowding (400 in a space made for 50) • Sleeping sitting up (“like sardines”) with light on • Food served once a day

10. Prison School - outcomes • Three students have gone to university after completing high school diploma within prison • Marketable skills such as mathematics and literacy upon re-entry into society • Stimulating, motivating activity for teachers • “I got convicted to 7 years imprisonment in 2005 and stayed for 4 years. Then while actually here I saw that other people were going to school, so I decided to join them even though I thought this was a difficult environment for school, but still more I joined. I joined Form 2 and in 2007 I wrote my Malawi School Certificate of Education and I got 21 points. I applied for […] Mzuzu University where I was successful to do a Bachelors in Arts Education, to start in September.” – young prisoner released early from prison to attend university. • “All my life I didn’t know about school, I went to school but stopped, but since after joining this prison after realizing that there is school I started learning in standard 5. And in standard 5 I am now able to read and to write, but before I didn’t know how to read and to write.” – middle-aged farmer and butcher from rural village outside Mzuzu.

11. Population and Rights Targets Identified challenge Channel to achieve Main goal Main goal Stigmatization among → Right to Health/ Mentally disabled people Medication Stigmatization among → Right to PrisionersEducation Right to be a Member of Society

12. Successes & Challenges: Outreach Clinics • Challenges • Patient Adherence • Volunteers – nurses’ eyes within the community • No privacy (open clinics, however also a different culture) • Successes • Dramatic change in patients’ social standing • Numbers of patients at outreach clinics increasing (1500  2064) • Simple model can work for getting medication out to rural areas, with high impacts: • Family and community acceptance • Increased functionality (agriculture, tending animals, constructive participation in community development) – accepted as member of society • Essential as patients don’t have the financial means to travel into the urban centre

13. Successes & Challenges: Prison School • Successes • Students get out of prison early to go to university • Skills learned increase marketability and break “jailbird” cycle • Positive for prisoners include literacy, certification, marketable skills • Positive outcomes for teachers include sense of self-worth, furthering their own education, and experience teaching • Challenges • Guards’ support is necessary for school to function • Illiteracy may prevent many from joining (only 40/400 prisoners participate in school) • Working on instituting a literacy program • teachers and students attend school at expense of access to outside environment (access to outside environment can provide pocket change from begging or menial work, tomatoes or other foodstuffs, etc. – greater short term benefits) http://www.nytimes.com/slideshow/2005/11/05/international/20051106_PRISONS_SLIDESHOW_9.html

14. Discussion • Further questions • Long term impact of these programs? • What needs of these stigmatized populations are not being addressed? At which level should they be addressed? (Community/Local to Government/National) • Are these program templates transferable across cultures and countries? Should they be used as templates? • What obstacles might arise in the future concerning implementation?