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“I Will Not Die That Way. Why Should I Be Forced To?” Brittany Maynard’S Story in the Campaign for Assisted Dying, a Narrative Perspective

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“I Will Not Die That Way. Why Should I Be Forced To?” Brittany Maynard’S Story in the Campaign for Assisted Dying, a Narrative Perspective “I will not die that way. Why should I be forced to?” Brittany Maynard’s story in the campaign for assisted dying, a narrative perspective Jenny Sandström Master’s Thesis Area and Cultural Studies Faculty of Arts University of Helsinki April 2019 Tiedekunta/Osasto – Fakultet/Sektion – Faculty Laitos – Institution – Department Faculty of Arts Tekijä – Författare – Author Jenny Sandström Työn nimi – Arbetets titel – Title “I will not die that way. Why should I be forced to?” Brittany Maynard’s story in the campaign for assisted dying, a narrative perspective Oppiaine – Läroämne – Subject Area and Cultural Studies/North American Studies Työn laji – Arbetets art – Level Aika – Datum – Month and Sivumäärä– Sidoantal – Number of pages Master’s Thesis year 84 04/2019 Tiivistelmä – Referat – Abstract Physician-assisted dying in the United States, where a terminally ill person that fulfils certain criteria can be prescribed a substance to end their life, is legal in eight states as well as in Washington D.C. Advocacy organizations have played a central role in getting legislation passed. The state of Oregon, where the practice has been legal for over 20 years, serves as a model for legislation that is being proposed in other states. The advocacy organization Compassion & Choices, based in Portland, Oregon has been central in framing the issue of assisted dying in the United States. In 2014, Compassion & Choices released a video featuring the story of a young woman named Brittany Maynard who was dying of brain cancer. The video went viral and was viewed over 9 million times in the month after being released, making Maynard the face of assisted dying in the United States. In this thesis I examine her story through narrative analysis as it is told in the campaign video and in three other videos released after the first one. Two of the videos in the material were released after Maynard’s death and in them the story is told by Maynard’s husband Dan Diaz, who has actively continued campaigning for assisted dying. The aim of this thesis is to examine how advocacy organizations such as Compassion & Choices use personal stories to get attention for their cause and try to influence policy. The content of Maynard’s personal story, how it is told, and how the story is connected to arguments for assisted dying is analyzed through narrative methods. The results show that family values and an active lifestyle are emphasized in the narrative. The story alternates between statements presented as facts and personal experiences that are more emotional. The main arguments for legalization that are made in the videos are related to autonomy and personal choice and to avoiding unnecessary suffering. The personal experiences of Maynard are related to these arguments through how the story is told through speech, text and pictures. Strategies to frame the policy issue in a certain way and get the audience to identify with Maynard are also employed. Avainsanat – Nyckelord – Keywords assisted dying, euthanasia, right to die, advocacy organizations, storytelling Säilytyspaikka – Förvaringställe – Where deposited City Centre Campus Library Muita tietoja – Övriga uppgifter – Additional information Tiedekunta/Osasto – Fakultet/Sektion – Faculty Laitos – Institution – Department Humanistiska fakulteten Tekijä – Författare – Author Jenny Sandström Työn nimi – Arbetets titel – Title “I will not die that way. Why should I be forced to?” Brittany Maynard’s story in the campaign for assisted dying, a narrative perspective Oppiaine – Läroämne – Subject Region- och kulturstudier/Nordamerikastudier Työn laji – Arbetets art – Level Aika – Datum – Month and Sivumäärä– Sidoantal – Number of pages Pro gradu-avhandling year 84 04/2019 Tiivistelmä – Referat – Abstract Assisterad död (eng. assisted dying) i USA, där en döende person som uppfyller vissa kriterier kan få ett recept på läkemedel för att avsluta sitt liv, är lagligt i åtta delstater samt i Washington D.C. Intresseorganisationer har spelat en central roll i lagstiftningen relaterad till dödshjälp. Oregon, där dödshjälp varit lagligt över 20 år, har fungerat som en modell för lagstiftningen i andra delstater. Intresseorganisationen Compassion & Choices som har sitt huvudkontor i Portland, Oregon, har lyckats väl med att influera hur assisterad död uppfattas i USA. År 2014 publicerade Compassion & Choices en video där en ung kvinna som var döende i cancer, Brittany Maynard, delade sin historia. Videon fick stor uppmärksamhet och sågs inom en månad över 9 millioner gånger. Maynard blev känd i hela USA som en representant för assisterad död. I den här avhandlingen undersöker jag hennes historia genom narrativ analys. Materialet består utöver kampanjvideon av tre andra videon där Maynards historia berättas. Två av dessa videor publicerades efter Maynards död och i dem är det hennes man, Dan Diaz, som berättar hennes historia. Diaz har aktivt efter Maynards bortgång fortsatt kampanjen för att assisterad död ska legaliseras. Målet med denna avhandling är att undersöka hur organisationer som Compassion & Choices använder sig av personliga historier för att skapa uppmärksamhet för sin sak och för att försöka påverka politiskt beslutsfattande. I centrum för analysen, som görs genom narrativa metoder, står innehållet i Maynards historia samt hur historien berättas och hur narrativet anknyts till argument som stöder legalisering. Resultaten visar att familjevärderingar och värderingar om en aktiv livsstil understryks i narrativet. Berättelsen växlar mellan fakta och personliga upplevelser som är mer emotionella. De huvudargument för legalisering som presenteras är argument relaterade till autonomi och rätten att välja samt argument om att undvika onödigt lidande. Maynards personliga upplevelser kopplas till dessa argument genom hur historien berättas i tal, text och bilder. Materialet innehåller också strategier för att framställa den politiska frågan på ett visst sätt och få publiken att känna solidaritet med Maynard. Avainsanat – Nyckelord – Keywords eutanasi, assisterad död, dödshjälp, intresseorganisationer, historieberättande Säilytyspaikka – Förvaringställe – Where deposited Campusbiblioteket i centrum Muita tietoja – Övriga uppgifter – Additional information Contents 1. Introduction ......................................................................................................................................... 1 1.1 Research questions........................................................................................................................ 2 1.2 Outline ........................................................................................................................................... 3 2. Background and context ...................................................................................................................... 5 2.1 Assisted dying terms and concepts ............................................................................................... 5 2.2 A short history of assisted dying in the U.S. .................................................................................. 8 2.3 The Oregon model ....................................................................................................................... 14 2.4 Previous research ........................................................................................................................ 20 3. Theoretical and methodological framework ..................................................................................... 28 3.1 Narrative analysis ........................................................................................................................ 28 3.2 The political use of stories ........................................................................................................... 33 3.3 Communication strategies of advocacy organizations ................................................................ 36 4. Materials and methods ..................................................................................................................... 40 4.1 Material ....................................................................................................................................... 40 4.2 Methods ...................................................................................................................................... 44 4.3 Validity in narrative analysis ........................................................................................................ 45 5. Maynard’s life (and death) story ....................................................................................................... 48 5.1 Family values ............................................................................................................................... 48 5.2 Interests, personality traits and beliefs ....................................................................................... 53 5.3 How is the story told ................................................................................................................... 58 6. Arguments, counter-arguments and communication strategies ...................................................... 62 6.1 Arguments ................................................................................................................................... 62 6.2 Common sense, framing, and normalization strategies ............................................................. 70 6.3 Public opinion and communication strategies
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