We need to talk about Ballen: towards a working protocol for representing people with intellectual disabilities and the photographic practice

De Beer Proctor, Christi (2021-12)

Thesis (MPhil)--Stellenbosch University, 2021.

Thesis

ENGLISH ABSTRACT: Representations of people with intellectual and developmental disabilities (PWIDD) in the media are rare, and when they do exist, portrayals tend to reflect and perpetuate their marginalization by relying on harmful stereotypes and tropes. Knowing that the media can be a powerful influence on public discourse, this study argues that it is the ethical responsibility of media-makers to interrogate our own practice and to carefully consider how our representations affect PWIDD. Additionally, if we consider it our ethical imperative to uphold the dignity and humanity of PWIDD and to advocate for their civil rights, it stands that they be given the opportunity to have a say in their own representations, and to participate in research which concerns them. So, how do we make media representations of PWIDD more inclusive, ethical and humanizing? The aim of this study is to formulate working ethical guidelines for media-makers to aid the production of compelling, diverse and destigmatising representations which foregrounds PWIDD’s humanity and dignity. Media-makers are members of the mass media (e.g. photographers, journalists, illustrators, editors, producers, stylists etc.) who create and influence the creation and dissemination of media. This study was grounded in feminist disability studies and drew on literature about disability rights, cultural studies, journalism and media studies. Through participatory action research’s reoccurring process of fact-finding, action, reflection and championing for social justice and change, I explored how PWIDD wanted to be represented, or how they wanted to be described and portrayed in various forms of media. Using multimethodology, I collected a wide array of data from various sources. Firstly, through continuously investigating the literature and interrogating past and contemporary representations of PWIDD in the media. Then, by embarking on a collaborative photographic project with several participants, using Photovoice, interviews and photographic portraiture. By using Thematic Analysis (Braun and Clarke, 2012) to code, compare and categorise the data (transcriptions and photographs) eight themes emerged. These themes centred around what was important to the participants which could inform media-makers planning to represent PWIDD. By integrating the findings and themes with the literature, I was able to develop working guidelines which aim to subvert the ableist gaze. These included centering disabled voices, avoiding cliches, stereotypes and tropes and making the process inclusive and accessible. The results of this study suggested that active, accessible and meaningful collaboration between media-makers and PWIDD is not only possible, but desirable to create compelling, diverse and destigmatising representations which foregrounds their humanity and dignity.

AFRIKAANSE OPSOMMING: Representasies van mense met intellektuele en ontwikkelingsgestremdhede (MMIOG) vind weinig in die media plaas. Indien dit wel plaasvind, is uitbeeldings dikwels geneig om marginalisering te reflekteer en te vererger deur staat te maak op skadelike stereotipes en afmakende verteenwoordigings. Wetende dat die media ‘n magtige invloed op openbare gesprek het, argumenteer hierdie studie dat mediamakers ‘n etiese verantwoordelikheid het om ons eie praktyke voortdurend te bevraagteken en versigtige oorweging te skenk oor hoe ons representasies MMIOG affekteer. Bykomend hiertoe, as ons oorweging skenk aan die etiese verantwoordelikheid om die waardigheid en menswees van MMIOG te handhaaf en hulle siviele regte te bevorder, beteken dit dat hulle die geleentheid gegee word om ‘n sê te hê in hul eie representasie en om deel te neem in die navorsing wat hulle raak. So, hoe maak ons media respresentasies van mense met verstandelike en ontwikkelingsversteurings meer inklusief, eties en humanisties? The doel van hierdie studie is om werkbare etiese riglyne vir media makers te formuleer om te help met die produksie van oortuigende, diverse en destigmatiserende representasies wat die menslikheid en waardigheid van MMIOG op die voorgrond plaas. Mediamakers is lede van die massa media (bv. fotograwe, joernaliste, illustreerders, redakteurs, regiseurs, styliste ens.) wat die skepping en verspreiding van die media skep en beïnvloed. Die studie was gegrond op Feministiese Gestremdheidsstudies (Feminist Disability Studies) en is ontgin uit literatuur wat handel oor gestremdheidsregte, kulturele studies, joernalistiek en media studies. Deur Deelnemende Aksienavorsing (Participatory Action Research) se herhalende proses van feitevinding, aksie, refleksie en kampvegting vir sosiale geregtigheid en verandering, ondersoek ek hoe MMIOG gerepresenteer wil word in die media, asook hoe hulle in die verskillende vorme van media beskryf en uitgebeeld wil word. Met die gebruik van multi-metodologie het ek ‘n groot verskeidenheid data uit verskillende bronne versamel. Eerstens, deur die aaneenlopende ondersoek van die literatuur en die indringende ondersoek van vorige en hedendaagse verteenwoordigings van MMIOG in die media. Daarna, om ‘n samewerkende fotografiese projek met verskeie deelnemers te begin deur gebruik te maak van Photovoice, onderhoude en fotografiese portrette. Met die gebruik van Tematiese Analise (Braun en Clarke, 2012) om die data te kodeer, vergelyk en te kategoriseer (transkripsies en foto’s), het agt temas na vore gekom. Hierdie was gesentreerd rondom dit wat belangrik was vir die deelnemers en waaroor mediamakers hulself moet vergewis wanneer hulle beplan om MMIOG te verteenwoordig. Deur die bevindinge en temas van die literatuur te integreer, was ek in staat om werkende riglyne op te stel wat ten doel het om ‘n validistiese blik (ableist gaze) te ondermyn. Dit het die sentrering van gestremde stemme, vermyding van cliches, stereotipes en afmakende uitbeeldings ingesluit en die proses is meer inklusief en toeganklik gemaak. Die resultate van die studie suggereer dat aktiewe, toeganklike en betekenisvolle samewerking tussen mediamakers en MMVOV nie alleenlik moontlik is nie, maar verkieslik ten einde oortuigende, uiteenlopende en destigmatiserende representasies van hulle menslikheid en waardigheid op die voorgrond te plaas.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/123802
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