What could one learn about healthcare needs by living with cannibals, sex workers and the ‘others’ that are parts of marginalized communities worldwide? Tapati's trajectory into public health policy was shaped by early life challenges growing up in India where she experienced first-hand what it meant to be marginalized. Pursuing a degree in social work and a Doctoral degree in public health policy, at Indiana University Tapati’s research reveals eye-opening insights and shares solutions to translate healthcare policy into implementable services effectively received by the communities they are designed to help.
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I read this book why I'm afraid to tell
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you who I am because that is all what I
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have not to convince or to convert you
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but in the next couple of minutes I
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would be sharing some of my experiences
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of interaction communication connecting
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but some of the incredible terrific
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women I had met and interacted I was
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born in a small town in India my father
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used to work in the public sector dad
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Baba as I used to call him in my native
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language mom a docile semi illiterate
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homemaker I'm the single child as you
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see the picture kind of an ideal small
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family ideal slightly differently ideal
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around the time I was born Baba was
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diagnosed being diabetic which affected
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his eyes cataract glaucoma and finally
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he became blind in a span of around 10
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years when I was in grade five different
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Mac made me very sad agonized the heart
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was broken but the pieces were few
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because I was born in that situation I
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saw the prognosis happen I saw how his
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eyes bled every day I saw how every
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family level income savings was used
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more for his great care and treatment
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rather than anything else and to because
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I was growing up more as a caregiver so
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my role was more to learn how to walk
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him how to clean his toilet how to give
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him the shots of insulin and all how to
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shave him until one day the story was
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slightly different certainly asked me
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can you define the color green to me I
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was like yeah they are the trees the
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grass was like no those are just
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examples I'm not able to recollect the
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color can you help me can you describe
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the color green to me i again tried
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again gave a whole bunch of examples and
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i know that i didn't have the answer
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that day I didn't have the answer I
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don't even have the answer yet today but
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what I realized was if you can't
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if you can't converse in the language of
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the other person unfortunately doesn't
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moving on around three years later by
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the time I was 13 huge problems started
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happening between my father and his
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employing organization around his
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employability so implications multifold
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and much much deeper so as a being in a
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patriarchal society as I was a male
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member is supposed to earn and run the
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family by then he had already lost his
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eyesight paradoxically he was forced to
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take a voluntary retirement so which
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so no income no savings which we had we
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had to leave this apartment which we
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were staying which belonged to the
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organization so which means homelessness
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mom semi-illiterate neither she had the
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ability and belonging to a very
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patriarchal family she was not even
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allowed to step out forget allowed to
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work outside so which means a whole
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bundle of deficit nothingness which was
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there on the family how did it impact
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penury almost at the verge of begging a
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huge discord which started between my
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parents the ugliest form of domestic
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violence because each of us was trying
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to cope up with the crisis we were in
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I think just the survival goal as if if
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tomorrow is there then how do I survive
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through like one day when they were
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fighting very hard I didn't even want to
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break the fight rather I just grabbed my
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dinner and ran out of the house in India
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you have these trash bins open trash
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bins on the streets I went to one of
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those trash bins it was cold that night
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it was dark it was scary street dogs
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were playing I somehow gobbled my food
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and then in the whole fear I just wanted
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to throw up but then I didn't I didn't
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throw up because I thought that if I
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threw up now my believe would be empty
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and if I didn't get any food the next
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day then what that was the level of
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poverty of separation which was
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happening then maybe numbers make things
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sound a bit more cathartic around 40
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days of homelessness that point in time
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when we were turned out of this house we
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didn't have any belongings just some of
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our clothes and some of my books it's
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maybe a bear hope that I would be
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completing my high school when finally
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mom found out and a very small apartment
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where we shifted for the first time I
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think I felt that I could focus I could
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study and maybe complete my high school
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we were just trying to adjust to that
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new space new situation two years three
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years down the line when I was around 16
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one Sunday mom and I woke up
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realize that my father has died to
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till date here now after so many years I
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think I don't have enough of semantics
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or appropriate sentiments to really
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describe what it feels when your father
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hangs from the ceiling fan and your mom
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lies unconscious on your shoulders
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trust me we were again turned out of
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this apartment because the father had
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died to suicide in this house life that
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time if I describe was just a bunch of
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punctuation the institutions I was
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dealing with post-mortem Bank hospital
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police a whole lot of just humiliating
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questions interrogations answers most of
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them I didn't have I used to be this
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theory and stand there people around me
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friends relatives neighbors peers whole
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lot of exclamation marks what happened
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how did it happen how could a blind man
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did you never get a hint didn't have any
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answers either within me I think a huge
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question mark because none of the
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definitions matched anymore home was no
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more a place of a board of safety of
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togetherness peers didn't have any
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relatives or not people with whom I
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a complete social outlier and literally
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didn't have any reasons to live any
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further nor did I have any energy today
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I think I stopped there but I at times
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the road in itself takes you to the
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destination it was at that point in time
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that somebody introduced me to this
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discipline called Social Work I got
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through in an University which was a
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public university and because the
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tuition was serving less so minimal I
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could get an admission there and even
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think of starting studying once again
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integral to Social Work is fieldwork and
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fieldwork means you go to the
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communities vulnerable communities
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so-called stigmatized communities and do
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some Community Development Community
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Engagement work with them
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that was my first realization of first
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trying to build a connect or
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understanding that there is some
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resonance which I could feel between my
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stories and stories of the vulnerable
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populations the rural populations the
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indigenous populations and that's how I
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chose for my higher education humanities
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social work population studies and now
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I'm doing my PhD in public health with
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the concentration in community
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engagement and health policy it also
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gave me the opportunity to work with
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various nonprofits in India and in
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Africa and the people I interacted with
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so called labeled stigmatized vulnerable
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polluted populations sex workers
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trafficked women children who were
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abused sexually abused by maybe their
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fathers and have now contracted HIV drug
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using young adults prisoners named them
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how does it help me at an agency level
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tremendously because for the first time
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I understood that connect once again
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which I felt when I was studying social
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work their stories matched so much with
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mine the resonance was so much that
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rapport building became very spontaneous
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sitting with a group of sex workers
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became so easy and talking with them
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understanding their stories learning
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from them to I guess also help me
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relieve myself that her father did not
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commit suicide rather he died of suicide
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because suicide is no crime you don't
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commit it you die of it like you die of
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any other public health issue and at the
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individual societal family
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organizational level we have to act
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towards it so that no person takes such
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a step as my father did third I guess
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the whole spectrum of understanding that
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this is normal visibly that is not so
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normal mainstream visa be not so
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mainstream I think that understanding
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that acceptance that acknowledgement
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came within me and also that
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appreciation that there is no one normal
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every story every person every hydration
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is real and not just real these are
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people who have dealt with lived with
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smiled cried stumbled fallen risen up
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not just with with the lack of resources
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not just with the adversities but with
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some basics without some of the basics
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called love care and attention
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unfortunately much of us do not even get
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it these basic things and we don't even
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realize that I guess it was the whole
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understanding that looking at a person a
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person centric centric approach is not
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just enough one needs to look at that
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person from a holistic perspective link
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that person in the macro situation of
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how policies are there how other things
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are there and because health and
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health behavior and human behavior or
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interaction is is more of an interplay
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between the self and the systems it's
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not one person standing alone
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programmatically it was a huge learning
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reaching out to hidden populations for
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example the cannibals in Africa now
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cannibalism in this region of Africa I'm
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talking about is illegal so no data set
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no report no document really highlights
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that cannibals are they how did you
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discover dead bodies were vanishing from
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the graves overnight and then we
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understood that the cannibals are there
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now who would reach out to them
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how would programs or a person actually
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reach out to such kind of people only
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when you build a connect because
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so-called these are risky populations
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but risk resilience and relative
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deprivation has to be seen in that whole
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trajectory second made also made me also
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very sensitive to very simple things
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like when I was working with a sex
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workers group in India very simple
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question and I asked where do you live
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and this lady just flared up she said I
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don't have any address I don't have any
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roots write whatever you want to
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realised that something which might seem
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very normal very natural to many of us
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could have a very different social
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construction very different story very
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different sensitivity for another person
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and that's how maybe the gathering of
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evidence of hidden population
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stigmatized populations happen as that
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gathering of evidence sub population
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based evidence happened policymakers
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programme heads got interested got
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excited because then they understood
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that policies and programs need to be in
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the language of the people considering
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the socio-cultural sensitivities of
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people and then only they work and
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that's how maybe some of the programs
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like the rural Research Center in
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India came up because H and this was a
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rural research center on HIV and AIDS
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because HIV and AIDS otherwise is
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predominantly seen as a urban issue
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without realizing the rural dynamics are
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very different migration patterns are
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different living style is different
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traditions are different and that is how
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as this rural Research Center was built
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up there was also an understanding HIV
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among married women because you more or
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less think or presume that it's married
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women are safe because they are presumed
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to be monogamous men are also presumed
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to be monogamous who are in the
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so I guess summing up a couple of things
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one one needs to learn to play with once
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truths not just embrace them but play
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with them stumble with them juggle with
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them because unless you are playing with
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your own truths the shaky truths the
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shady truths the stigmatizing truths you
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are stigmatizing yourself and if the
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ones you learn how to play with your own
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truths then comes the ability to link
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yourself connect yourself to the
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populations to the people who are
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so-called stigmatized and then becomes a
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more of an evidence building more of a
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respectful connection and more of
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building that political will that
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connecting with communities community
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engagement is not just a bunch of
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interventions rather it has to be a
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strong policy imperative and policy
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imperative doesn't begin or end in a
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policy document or in the helm of a
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policymaking institution rather it
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begins in the intent in the sentiment in
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the passion and commitment of each one
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of us and all of us thank you so much
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