How to Be an Advocate for Yourself and Others an HIV Treament... · Through Social Media • Social media describes ways to communicate or share information with large groups of people

HowtoBeanAdvocateforYourselfandOthers

Together,wecanchangethecourseoftheHIVepidemic…onewomanatatime.

#onewomanatatime #thewellprojectwww.thewellproject.org

WhatIsanAdvocate?

Advocate(n.): Apersonwhopubliclysupportsorrecommends aparticularcauseorpolicy.

www.thewellproject.org

HowtoBeanAdvocateforYourselfandOthers

• IfbeingapublicHIVadvocatemakesyounervous,othertypesofadvocacymightbeafirststep– Youmayknowthatyouwanttodosomething,butyoumaynotknowwhattodoorwheretostart

• Learningmoreaboutdifferentformsofadvocacycanhelpyourealizethat…

Youarealreadyanadvocatealmosteveryday!


Self-Advocacy

Everytimethatyouspeakupforyourselforothers,youareanadvocate

• Itmaybeassimpleas:– Lettingthecashieratthegrocerystoreknowthatsheoverchargedyou

foranitem– Tellingyourchildrennottospeaktoyoudisrespectfully

• Itcanalsobemoredifficult,like:– Fightingfordisabilitystatus– Filingacomplaintwithhumanresourcesfordiscriminationor

harassmentatyourjob


Self-AdvocacyinHealthcare

Togetthebestcarepossible,speakupforandsupportyourself:• LearnasmuchasyoucanaboutHIV,yourhealth,andyour

treatmentoptions• Takenotesduringorimmediatelyafteryourvisitsothatyoucan

remembertheimportantpointswhenyougethomeand/or• Inviteafriendorfamilymembertothevisitwhocanalsotake

notes,andhelpyouremember• Askforandkeepcopiesofallofyourmedicalrecords,suchas

labresults• Getasecondopinionaboutanyimportanthealthissue


Self-AdvocacyinHealthcare

Otherwaysyoucanadvocateforyourselfwithyourhealthcareteam:• Makealistofquestionsforyourhealthcareproviderbefore

yourappointment• Askquestionsaboutthemedicationsyou’retaking,ornew

medications you’veheardabout• Anytimeyoudon’tunderstandsomethingyourprovidersays,

askforanexplanation• Discusshealthissuesthatareonyourmindwithyourprovider–

eveniftheydonotseemlikeabigdeal• Offersuggestionsandfeedbacktoyourhealthcareteamabout

waystoimproveservicesforpeoplewithHIVwww.thewellproject.org

IndividualAdvocacyforOthers

• Supportingsomeonewhentheyneedhelp,ortryingtofindasolutionwhensomeonehasaproblem

• Examplesinclude:– Helpinganelderlyneighborfigureoutlocalshuttleandbusschedules

sosheorhecancontinuetoliveindependentlywithoutdriving– Contactingschoolofficialsafterlearningachildwasbulliedatschool– Helpingafriendpracticeorrole-playadifficultconversationsheexpects

tohavewithherboss– Writingorcallingcityofficialstoimproveoraddressanissueinyour

community


HIVPeerAdvocacy

• SupportinganotherpersonlivingwithHIVaroundanHIV-relatedissue,basedonyoursharedexperience

• Examplesinclude:– Helpingsomeoneinyoursupportgroupwhoishavingtrouble

understandingHIVtreatmentmaterials– Linkingafriendtoabetterhealthcareproviderafterhearingshewas

notgettingherquestionsansweredorthecaresheneeded– VolunteeringatanAIDSServiceOrganization(ASO)tobea

resource/peeradvocateforpeoplewhoarenewlydiagnosed


CommunityAdvocacy

• Alargerversionoftheindividualadvocacythatyoumayalreadypracticeinyourdailylife

• Involvesgroupsofpeopleactingtoaffectpositivechange– Whenmorethanonepersonspeaksupaboutanissue,themessage

canbeevenstronger

• Beforegettinginvolved,decidehowcomfortableyouaredisclosingyourHIVstatus

• Thisisapersonaldecisionthatrequirescarefulthoughtanddiscussionwithpeopleclosetoyou


CommunityAdvocacy

Whetheryoudecidetogopublicwithyourstatusorkeepitprivate,youcanstillbeacommunityadvocate• Examplesinclude:

– SpeakingatachurchorotherorganizationabouttheneedsofpeoplelivingwithHIVorHIVprevention

– GettinginvolvedwithlocalHIVawarenessandfundraisingeventsbyparticipatinginanAIDSwalkorotherAIDSevent

– JoiningapatientadvisorygroupatanHIVresearchsite,anAIDSserviceorganization,oranHIVplanningcouncil


TreatmentAdvocacyThroughSocialMedia

• Socialmediadescribeswaystocommunicateorshareinformationwithlargegroupsofpeople

• Examplesinclude:blogs,chatrooms,videosFacebook,Twitter,Instagram,LinkedIn,YouTube

• Importanttoolfornon-profitorganizations,individualadvocatestogetinformationouttolargegroupsforlittleornocost


SocialMedia:Todos

• UseanaliasifyouarenotcomfortableusingyourrealnameinonlineHIVgroups,forumsorwebsites

• EducateyourselfaboutHIVusingresourcesandwebsiteslikeTheWellProject

• Becomingasuccessfulsocialmediaactivistrequiresalotoftimeanddedication(oftenvoluntary)

• Justgettingstarted?Considerjoininganexistinggrouporsocialmediacampaign


Political/PublicAdvocacy

Ifyouareinterestedinpoliticsandwanttohelpmakeadifferenceonanationalorinternationallevel…• Youmayconsiderbecominganadvocatethatfocuseson

policiesthatimpactissuessuchas:– HIVtreatment– HIVfunding– Genderequality– Women-centeredhealthcare– HIVcriminalization

• Mayinvolvecalls,visits,orletterstogovernmentofficials• Mostpublicorpoliticaladvocacygroupsprovidesomeformof

trainingwww.thewellproject.org

AdvocacyGroups

GLOBALADVOCACYGROUPS:– ATHENANetwork– CARE– CenterforHealthandGenderEquity

(CHANGE)– GlobalCoalitiononWomenandAIDS

(GCWA)– InternationalCommunityofWomenLiving

withHIV(ICW)– InternationalHIV/AIDSAlliance

US-BASEDADVOCACYGROUPS:– AdvocatesforYouth– AIDSUnited– BlackAIDSInstitute– CenterforWomenandHIV

Advocacy(HIVLawProject)– NationalMinorityAIDSCouncil

(NMAC)– NationalWomenandAIDS

Collective(NWAC)– PositiveWomen'sNetwork- USA– SisterLove,Inc.– 30for30– TreatmentActionGroup(TAG)


Therearemanyamazingadvocacyorganizationsfightingfortherights

ofpeoplewithHIV

Self-CareforAdvocates

• BeinganHIVadvocatecanberewarding,butifyoudon’ttaketimetorefillyourself,youputyourselfatriskforburnoutanddepression– Burnout:feelingcynicalaboutyourwork,doubtfulofyoureffectivenessoroverwhelmed,numb,frustrated,bored,unappreciated

– Depression:feelinghopeless,lackinginterestinmanyactivities,havingtroublesleepingorconcentrating,nottakingHIVtreatmentormanagingyourdisease


Self-CareforAdvocates

• Self-carecanbreakstresscycleleadingtoburnout,enableyoutorecoverenergyandpassion

• Whatdrainsyou?Whatfillsyouuporre-energizesyou?– Doyouneedmoresleep?Timeoutdoors?Agoodlaugh?Timetojournal?Eveningoutwithfriends?

• Youwillhavesomuchmoretosharewithothersifyoutaketimetocareforyourself


ManyPossibilities

• Becominganadvocateforyourself,anotherperson,orlargenumbersofpeoplecanberewardingandempowering– Beinganadvocatedoesnothavetomeanspeakingtothemedia,meetingwithpoliticians,orparticipatinginralliesanddemonstrations

– Therearemanywaystobeanadvocatethatarejustasvaluable

• Takeyourtimeinlookingatyouroptionsandfindingthebestfitforyou!


LearnMore!

Tolearnmoreaboutthesetopics,pleasereadthefullfactsheets:• HowtoBeanAdvocatefor

YourselfandOthers• APlaceattheTable:Havinga

VoiceinHIVPlanningandDecisionMaking

FormorefactsheetsandtoconnecttoourcommunityofwomenlivingwithHIV,visit:• www.thewellproject.org• www.facebook.com/thewellproject• www.twitter.com/thewellproject

Wantmoreinfoonsocialmedia?Seeourwebinar:UsingSocialMediaasaToolforEmpowerment&Advocacy


Documents

How to Be an Advocate for Yourself and Others an HIV Treament... · Through Social Media • Social media describes ways to communicate or share information with large groups of people