Building Resilience-Building Resilience-Challenging StigmaChallenging Stigma

Lessons from UgandaLessons from UgandaNoerine Kaleeba PhDNoerine Kaleeba PhD

Founder and Patron TASO Uganda Founder and Patron TASO UgandaVice Chair Uganda National Health Vice Chair Uganda National Health

Research OrganizationResearch Organization

Uganda The Pearl of AfricaUganda The Pearl of Africa

DRC

Tanzania

Kenya

Sudan

Rwanda

L. Victoria

Challenging StigmaChallenging StigmaTurning Tragedy into Triumph Turning Tragedy into Triumph

Christopher Christopher and Noerine and Noerine Kaleeba Kaleeba

His return His return home from UK, home from UK, Oct. 1986- the Oct. 1986- the fear, shame fear, shame confusion, and confusion, and profound profound stigma stigma

Chris & Noerine returning from UK following his AIDS diagnosis.

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Defining resilienceDefining resilience

The ability to recover relatively fast The ability to recover relatively fast and comprehensively from severe and comprehensively from severe events/experiences events/experiences

The maintenance of competencies The maintenance of competencies even under severe strain/stresseven under severe strain/stress

The ability to bounce back after a The ability to bounce back after a stressful event/ experiencestressful event/ experience

To be “bent but not broken”To be “bent but not broken”

Self Belief- the Self Belief- the 33 Pillars of Pillars of resilience.resilience.

I am:I am: Anchors on the inside strengths Anchors on the inside strengths : : I am honest and truthful;I am honest and truthful; I care; I am I care; I am confident.confident.

I have:I have: Anchors on the external Anchors on the external support :support : I have a good education; a good I have a good education; a good network of people; family supportnetwork of people; family support

I can:I can: Anchors on skills which the Anchors on skills which the person has learned- person has learned- I can do this!!I can do this!!

The “The “I AMI AM” Pillar of Resilience” Pillar of Resilience

Evolves from a range of emotions Evolves from a range of emotions A good autobiographical memory ( A good autobiographical memory ( positive positive

and negative relationshipsand negative relationships)) A sense of belonging ( A sense of belonging ( my rootsmy roots)) Charity begins at home-Charity begins at home-As long as it does not end As long as it does not end

there!!there!!

A value /belief system.A value /belief system. Creativity, innovation and curiosity (Creativity, innovation and curiosity (eager to eager to

learn)learn) Self confidence (Self confidence (am brown and proud!!am brown and proud!!))

Qualities of a resilient personQualities of a resilient person

Can ask for helpCan ask for help Is positive and has hope for the futureIs positive and has hope for the future Can set goalsCan set goals Puts effort into workPuts effort into work Prays and believes in God, or a Higher Prays and believes in God, or a Higher

Being, etc.Being, etc. Looks clean and organized; takes pride in Looks clean and organized; takes pride in

own appearanceown appearance

A Resilient personA Resilient person

Can deal with challenges and frustrationsCan deal with challenges and frustrations Takes responsibility for right and wrongTakes responsibility for right and wrong Is confidentIs confident cultivates relationships with peers and cultivates relationships with peers and

othersothers Puts ideas into actionPuts ideas into action Despite tragedies and difficulties, can Despite tragedies and difficulties, can

continue with routines of life (continue with routines of life (going to school, going to school,

community activities etc)community activities etc)..

Challenging HIV stigma?Challenging HIV stigma?

Negative attitudes/ feelings/reactions/actions from self or others due to HIV/AIDS

May result into labeling of person/groups of persons in way that reduces their dignity, self-image and self esteem

HIV stigma arises from:HIV stigma arises from:

Fundamental prejudices held by humans , blame, shame, guilt and negative fear associated with HIV and AIDS

Condemnatory and judgmental attitudes/actions associated to HIVAIDS related illness.

Enacted stigma=Discrimination!Enacted stigma=Discrimination!

What is “Self Stigma”?What is “Self Stigma”?

• Self imposed stigmatizing beliefs Self imposed stigmatizing beliefs and actions on oneselfand actions on oneself

• Fear of confronting HIV that Fear of confronting HIV that results in inaction, postponement, results in inaction, postponement, delay, denial and death.delay, denial and death.

• Fail to accept oneself, feelings of Fail to accept oneself, feelings of worthlessnessworthlessness

Self stigma- our worst enemy Self stigma- our worst enemy

Self Blame Self Blame

The AIDS Support organization-The AIDS Support organization-TASO UgandaTASO Uganda

Founded in 1987 building on a Founded in 1987 building on a spontaneous initiative by a small spontaneous initiative by a small group of people who responded to group of people who responded to stress and stigma of the HIV/AIDS stress and stigma of the HIV/AIDS diagnosis diagnosis

Primary aim was to support each Primary aim was to support each other to cope and to educate family, other to cope and to educate family, health care workers and general health care workers and general public public

16 Founders of TASO led by 16 Founders of TASO led by Noerine Kaleeba Noerine Kaleeba

All 16 were directly/indirectly All 16 were directly/indirectly affected affected

Seven were HIV+ died within first Seven were HIV+ died within first two years-close to 300 had been two years-close to 300 had been reachedreached

Others were health care workers Others were health care workers stressed by caring and losing stressed by caring and losing patients and their powerlessness.patients and their powerlessness.

Inspired by the example of Inspired by the example of Christopher KaleebaChristopher Kaleeba

Diagnosed at Castle Hill Hospital Diagnosed at Castle Hill Hospital while studying for MS at Hull while studying for MS at Hull UniversityUniversity

Treated with TLC while at Castle Hill, Treated with TLC while at Castle Hill, but stigmatise on returning home to but stigmatise on returning home to UgandaUganda

The Kaleeba family support to The Kaleeba family support to Christopher became to foundation on Christopher became to foundation on which TASO was built.which TASO was built.

Health, Hope , Dignity, Health, Hope , Dignity, PPositive ositive

attitudesattitudes, and “, and “Positive living”Positive living” Providing counselling , care/support Providing counselling , care/support Building compassion and care skillsBuilding compassion and care skills Reconstituting FamiliesReconstituting Families Strengthening existing support Strengthening existing support

systemssystems Developing new support systemsDeveloping new support systems ““Living positively and dying with Living positively and dying with

dignity” dignity”

Challenging HIV stigma in the Challenging HIV stigma in the w/placew/place

Develop HIV W/place policy and practices Develop HIV W/place policy and practices which provide:which provide:

Regular accurate info on HIV and AIDS, Regular accurate info on HIV and AIDS, enhance practical knowledge to reduce enhance practical knowledge to reduce fear of casual transmissionfear of casual transmission

A safe and confidential service for A safe and confidential service for employees to know their HIV statusemployees to know their HIV status

a safe forum to discuss sensitive topics a safe forum to discuss sensitive topics like sex, death, job security.like sex, death, job security.

Referral for care and support servicesReferral for care and support services

Challenging HIV stigmaChallenging HIV stigma

Support PHAs to challenge Support PHAs to challenge stigma in their livesstigma in their lives

Encourage advocacy activities Encourage advocacy activities around HIV/AIDS eg wearing the around HIV/AIDS eg wearing the Red ribbonRed ribbon

Reward role models, avoid Reward role models, avoid stigmatizing words, challenge stigmatizing words, challenge stigma when you see it .stigma when you see it .

Resilient and Resourceful!!Resilient and Resourceful!!