RELOADED Disability Studies Quarterly Summer 2007, Volume 27, No.3 <www.dsq-sds.org> Copyright 2007 by the Society for Disability Studies

The current study examines the nature of newspaper depictions of Prader-Willi syndrome (PWS) in major U.S. and international newspapers over a six-year period, from January, 2000 to December, 2005. PWS is a genetic disorder characterized in the medical literature by feeding problems, low muscle tone, developmental delay, and poor weight gain in infancy, followed by excessive or rapid weight gain due to hyperphagia (uncontrollable hunger), short stature, and mild to moderate mental retardation or learning disabilities in older children and adults. Other characteristics, such as distinctive physical features, behavioral problems ranging from tantrums to psychosis, sleep apnea, thick saliva, speech articulation problems, high pain threshold, temperature instability, and strong visual-spatial skills, have been noted to occur in some individuals (Lewis, Freebaim, Heeger, & Cassidy, 2002; Holm, Cassidy, Butler, Hanchett, Greenswag, Whitman, & Greenberg, 1993). While the syndrome is relatively rare, occurring in anywhere from 1 in 9,000 to 1 in 15,000 births, it is the most common genetic cause of obesity known today (Carrel, Myers, Whitman, & Allen, 2000).

As PWS is a syndrome, or a collection of characteristics, persons with the condition may exhibit a few or many of the above characteristics. While extreme food-seeking behaviors (and the resulting obesity) and behavioral and cognitive problems are typically associated with the syndrome, whether or not an individual will possess certain characteristics, and the severity of those characteristics, is affected by variables such as differences in the specific types of mutations or deletions (Veltman, Thompson, Roberts, Thomas, Whittington, & Bolton, 2004) and the effects of biological and environmental influences, including a supportive home environment, a dedicated medical team (Eizholzer, 2001), and growth hormone therapy started at a young age (Steinhausen, Eiholzer & Malin, 2004). Growth hormone therapy is now commonly prescribed to older children with PWS in the United States and is being tested on infants and toddlers with the syndrome, with generally positive results (Carrel, Moerchen, Myers, Bekx, Whitman & Allen, 2004). However, the therapy is as yet not approved in a number of other countries for the treatment of the growth deficiencies and poor muscle tone that typically characterize PWS (Paterson & Donaldson, 2003; Edmistone, 2003; Birnie, 2001). While morbid obesity has generally been associated with PWS in the past, a recent study found the majority of PWS study participants (63%) were not overweight (Wigren & Hansen, 2003). Furthermore, the researchers conclude, "the overall impression is that the eating disorder [associated with PWS] is managed relatively well … few parents needed family-directed support" (p. 449). In addition, advances in early diagnosis and intervention, educational strategies to accommodate students with special needs in American public schools, and new treatment and therapy options are improving the overall health outcomes and quality of life for many children and adults living with PWS today.

However, as PWS is a genetic disorder and therefore "permanent," individuals are likely to interpret the diagnosis as a prognosis; in other words, individuals in general are likely to assume that the genetic defect will determine specific outcomes, illustrating the phenomenon scholars have termed "genetic determinism" (Condit, 1999; Silva, 2005). The idea that our genes dictate outcomes rather than interact with environmental, personal, and social factors to influence health can be difficult to overcome (Parrott, Silk & Condit, 2003). As Condit (2004) notes, "the public cannot understand the language of an increasingly subspecialized scientific enterprise" (p. 1415). In this regard, understanding a genetic syndrome such as PWS, with varied and seemingly otherwise unrelated sets of characteristics, can be a difficult task.

In addition, since the syndrome typically affects physical and cognitive development, individuals with the syndrome are likely to be described by media representatives along stereotypes commonly used to define persons with disabilities. And, because the syndrome can result in obesity due to the lack of ability to feel full, combined with lower than normal muscle tone, those with PWS are also likely to experience the stigmatization of fatness that has become prevalent in our culture. Therefore, persons with PWS are likely to be categorized in the mass media along a variety of damaging stereotypes.

Media Reporting of Genetics and Disability

The mass media are generally regarded as a highly influential source of information; television cultivates our reality (Gerbner, 1998), and the media set our agendas (McCombs & Reynolds, 2002). If some scholars are correct, it might be easy to assume that the media are to blame for problems with public communication about genetics, and to assume that media coverage of genetics is generally characterized by inaccurate representations (see, for example, Henderson & Kitzinger, 1999; Richards, Hallowell, Green, Murton & Statham, 1995; Wonderlick & Fine, 1997). However, with regard to the reporting of genetics, researchers have found variations in accuracy between hard news versus feature stories (Henderson & Kitzinger, 1999), that print media are more accurate than television (Condit, Ofulue & Sheedy, 1998), and more recent coverage about genetics is more accurate than earlier coverage (Sheedy, 2000). This variation is important to note, since it should prevent the application of blanket statements about the effects of the mass media on public perceptions related to genetics information.

With regard to media and disability, Haller (2000) notes that the mass media "act as significant agents in socially constructing images of people with disabilities and disability issues in U.S. culture" (p. 284). In general, most of the findings regarding media coverage of persons with disabilities are discouraging to those who see the potential for mass media to help raise awareness and educate publics about important health and social issues. Stereotypes of persons with disabilities perpetuated in the mass media have included portraying them as dependent and helpless (Longmore, 1985a; Ross, 1997), subhuman (Longmore, 1985a), as victims, burdens, or threats (Donaldson, 1981; Nelson, 1996), as malevolent and criminal (Longmore, 1985b), or as "inspirational figures who overcame their disability by some miracle" (Lynch and Thomas, 1994). Clogston (1990) identified five models of news media representations of disability, including the medical model (similar to the "handicapped role" described by Longmore, 1985a), the social pathology model, the "supercrip" model, the minority/civil rights model, and the cultural plurism model. To these, Haller (1995) added the business, legal, and consumer models. Interestingly, in her study on the "Deaf President Now!" campaign, Kensicki (2001) reports that the campaign's ability to present itself along these stereotypes actually resulted in positive media framing of the movement, "as a story of struggle and subsequent accomplishment within the disability stereotype" (p. 164). Haller (1995) also examined the effects of this campaign on media coverage, noting that the models or frames most commonly used to represent Deaf persons were significantly impacted by the event.

In other research, a 1999 study of disability terminology in Canadian and Israeli newspapers found that more than half of the 117 articles reviewed used insensitive or disabling language (Auslander and Gold, 1999). Conversely, others have reported more positive findings regarding the coverage of persons with disabilities in the mass media: for example, Clogston (1991) found that newspaper reporters had "progressive" attitudes toward persons with disabilities, with those having had positive interactions with disabled people reporting the most progressive attitudes. Clogston (1991) also conducted a content analysis of newspaper coverage, and found in general that disability coverage was neither overwhelmingly traditional nor progressive, showing that perhaps some progress had been made since the 1980s. Farnall and Smith (1999) found that viewers of positive portrayals of persons with disabilities on television and in movies were more likely to perceive discrimination and less likely to report negative emotions when encountering those with disabilities, but these respondents also reported feeling awkward or uncomfortable with persons with disabilities. Finally, while Nelson (1996) wrote about persons with disabilities as the "invisible cultural group" and identified a number of negative stereotypes commonly used by the media to describe persons with disabilities, he later (Nelson, 2000) noted that, in spite of the media's ability to perpetuate stereotypes of persons with disabilities, they have played an influential and positive role in building the disability community.

One issue related to the portrayals of persons with disabilities in general, and persons with genetic syndromes specifically, is the likely tendency to associate primarily negative characteristics or health outcomes with a condition that is seen as a "birth defect" or "abnormality." Positive characteristics such as strong personalities, physical appearance, and visual-spatial skills are widely noted by parents, caregivers, and some researchers as being commonly found among persons with PWS (see http://www.pwsausa.org). For example, a brochure promoting the Vanderbilt Kennedy Center for Research on Human Development includes "unusual strengths in their abilities to solve jigsaw and word search puzzles, and in their personalities" as common characteristics of individuals with PWS (Vanderbilt University, 2004). Unfortunately, such observations are not often included in formal medical descriptions of the syndrome's "phenotype," or set of known characteristics (see, for example, Carrel et al, 2004; Eiholzer, 2001; Einfeld, 2005; Paterson and Donaldson, 2003), and as such may be overlooked by journalists attempting to research the syndrome when working on a story.

The Stigma of Obesity and PWS: The Fat Gene

Despite the fact that the most common characteristics associated with PWS involve a broad range of cognitive, emotional, physical, and social concerns, the problems with obesity and food obsession or foraging typically associated with the syndrome are probably considered the most newsworthy, and thus receive the most media coverage and public attention, for a few reasons. Obesity has become a significant public health concern in the United States, resulting in increased efforts to publicize the "obesity epidemic" and determine its cause. Since PWS is the most common known genetic cause of obesity, it is likely to begin to see more media coverage as scientists search for genetic predispositions for obesity among the general population. However, despite current estimates that about half of the U.S. population are now "obese" by public health standards (hence the "epidemic"), obesity is commonly associated with "characteristics generally considered negative" (Coulter, 1996; see also Hiller, 1981; Cossrow, Jeffery & McGuire, 2001; Kristen, 2002). Indeed, "obese people, especially women, have been told they are unattractive by their own choice; they are shunned by those who are thin and beautiful; they are more likely to be poor, and less likely to get out of the trap of poverty" (Coulter, 1996, p. 138). Scholars have noted that, historically, societal emphasis on weight control and health has led to the "assumption that anyone who was greatly overweight must be mentally or emotionally disturbed" (Pagliassotti, 2003, p. 10), while "regulatory norms of thinness are materialized and crudely shoved back into our face (sic)" (Ferris & Pitcher, 2005, p. 13).

A final reason that the obesity-causing characteristics of PWS are likely of interest to journalists is that the uncontrollable urge to eat and resulting food seeking or "foraging" behaviors commonly seen in older individuals with PWS are the most dramatic — and also the most debilitating. While most individuals with PWS have some form of learning disability or cognitive delay and often have issues with socialization and behavior, many of these individuals could probably function independently if they did not need to have access to food strictly controlled at all times. The excessive hunger, or hyperphagia, associated with PWS prevents many from holding jobs outside of the home (because few sources of employment are entirely food-free) and living alone (due to the need for constant supervision to restrict access to food). Persons with PWS who are affected by constant feelings of hunger are also likely to feel a great deal of desperation, anger and frustration in not being able to control their feelings and in being denied food, emotions that can lead to aggression and public conflict. People who never feel full and will do almost anything for food are likely to sell more newspapers (and align very clearly with the stereotype of the person with disability as a deviant or threat) than stories about people who are functioning well and living a normal or close to normal life, and who, by the way, also happen to have a genetic abnormality.

In sum, if previous studies on media coverage of genetics, disability and obesity are supported, success stories are only likely to be told by the media if the person with PWS can be portrayed along the stereotype of the rare person who miraculously "beats the odds" and somehow manages to overcome the obstacles "programmed" by genetics. Thus, we made the following predictions about major newspaper coverage of PWS:

H1: Newspaper coverage of the effects of Prader-Willi syndrome on individuals with the syndrome, their caregivers, and social networks will more frequently portray the more severe or negative aspects of the syndrome, such as uncontrollable hunger, severe behavioral problems, and stress to family members and caregivers compared to more positive stories.

H2: Newspaper coverage of persons with Prader-Willi syndrome will portray individuals along stereotypes commonly used to describe persons with disabilities and fatness.

Method

The articles included in this study were obtained by conducting a Lexis-Nexis database search during March, 2006. We set the overall search parameters to Major Papers and the time frame from January, 2000 to December, 2005. Thus, the study includes newspaper articles appearing in major newspapers over a six-year period. To attempt to identify as many depictions of PWS as possible, the search term "Prader Willi" was used to search the entire text of all articles in the General News category of major papers during the selected time period. All articles were reviewed to determine relevance; articles that only mentioned PWS but did not provide substantial descriptions or discussions of the syndrome (such as brief notes of support group meetings, or stories primarily about a different type of disorder or condition that briefly mentioned PWS) were excluded. A total of 68 articles are included in the final sample. Of these, 32 articles appeared in U.S. papers and 36 appeared in newspapers in all other countries.

To examine the study's hypotheses, articles were first coded along the following scheme: positive, mostly positive, mixed, mostly negative, and negative. Positive information related to PWS could include positive characteristics of the syndrome, such as favorable impressions of the person's personality or appearance, positive effects on siblings, caregivers, or others, or improved outcomes due to new treatments, therapies, or other interventions. Negative information related to PWS could include negative characteristics of the syndrome, such as obsessive eating or other behavioral problems, descriptions of the person's personality or appearance, effects on caregivers, family members, or communities, and outcomes as a result of the syndrome, such as institutionalization, arrest, or early death.

Articles were coded as "positive" if the article included positive aspects of the syndrome, and no or very minimal negative information related to the impact of the syndrome; "mostly positive" if the article included mostly positive but some negative statements about PWS, "mixed" if the article seemed to contain an equal amount of positive and negative information regarding PWS, "mostly negative" if the article contained mostly negative but some positive statements about PWS, and "negative" if the article contained negative aspects of the syndrome, with no or very minimal positive information related to the syndrome. To examine the stereotypes used to describe persons with PWS, headlines and articles were also reviewed for content representing stereotypes of persons with disabilities and obese persons previously identified by scholars such as Clogston (1990), Haller (1995, 2000), Lynch and Thomas (1997), Nelson (1996), Ross (1997), and Coulter (1996).

Results

To determine the general nature of the reporting of PWS in major newspapers over the time period, two trained, independent coders rated each article according to the above categories. Agreement was reached on 64 of 68, or 94.1%, of the articles. Using Scott's Pi, inter-coder reliability was calculated as 93.3%. To enable all 68 articles to be included in the categories, a third trained, independent rater coded the four articles in which agreement was not reached by the two other coders. In sum, five articles (7.4%) were coded as positive; seven (10.3%) were coded as mostly positive; 17 (25%) were coded as mixed; six (8.8%) were coded as mostly negative; and 33 (48.5%) were coded as negative. Overall, the stories coded negative or mostly negative comprised 37 articles, or 57.4% of the total sample, with the vast majority of those coming from international sources. Thus, the hypothesis that most of the articles would focus on the negative aspects of the syndrome was supported. While U.S. stories were generally more positive, they still only included 10 stories out of 68 (14.7%) that were coded as either positive or mostly positive in their entirety.

To illustrate the representations of PWS found in major newspapers during the five-year period, Tables 1 and 2 provide the headlines, newspapers, and dates of publication of the stories in each category in U.S. and international newspapers, respectively. Some trends and patterns were clearly observed in the headlines and descriptions of persons with PWS and the impact of the disability on their families and social networks, as follows.

Discussion

The range of coverage of Prader-Willi syndrome during this time period partially illustrates the continuum, or "sliding scale," of media coverage of disability described by Haller (2000), where "at one end are the images that reinforce past pity and a fear of disability, and at the more modern end, media images present an empowered and equal social group" (p. 278). The tone and nature of the reporting in these stories also largely represent a common assumption cited by Bowe (1978): "that disabled people are different from us more than they are like us; that their disabilities somehow set them apart from the rest" (pp. 108-109). In describing persons with PWS as a menace to themselves and others, impossible to care for, and a burden to society, the more negative stories identified in our analysis serve only to demonize these individuals and create social distance from the norm. In describing persons with PWS as exceptions to the rule, some of the more positive stories also served to distance them from the rest of us (as well as others with PWS, ironically), albeit in a very different way. In general, the results of the current study supported the prediction that most of the reports would focus on the more negative aspects of PWS and highlighted differences among U.S. and international major newspapers during the time period. While there were some positive reports about Prader-Willi syndrome, with more positive reports in U.S. versus all other news sources, overall, the majority of stories were primarily negative, or at least included equally negative and positive information, with the negative portrayals also often aligning with the stereotype of the fat person as deviant.

In contrast, a trend observed in the data was that U.S. stories about PWS have become increasingly more positive, and more accurate, in recent years. For example, some of the newer U.S. stories highlighted new therapies, treatments, and educational strategies that are literally transforming commonly-held assumptions about the syndrome along with the experiences and abilities of many of those who have it. The increased presence of these types of stories in U.S. papers indicates a possible impact of media advocacy efforts on the part of individuals knowledgeable about PWS as well as formalized groups such as PWSA(USA). More stories appearing in U.S. papers described PWS more accurately; in other words, rather than describing the syndrome in absolute terms, where all persons with PWS will have certain characteristics, these stories used more qualifying terms and better depicted the broad range of possible characteristics commonly associated with the syndrome. Such stories often quoted PWSA(USA) directly when reporting the genetic and medical aspects of the syndrome and even referred readers specifically to local chapters of the organization and/or its website. This finding highlights the potential impact of such a group on media coverage and awareness. The experiences of celebrities were also found to contribute to more positive portrayals of the syndrome, and in the case of one U.S. celebrity, whose daughter was diagnosed with PWS in 2002, stories were noticeably more accurate in their depictions of the syndrome, pointing to the potential influence of such individuals on media coverage of disabilities such as PWS.

Many of the positive articles did resort to common disability stereotypes, such as the supercrip or the tragic but brave hero overcoming the odds dictated by genetics. However, these kinds of stories are likely welcomed by many persons with PWS and those who know them. These portrayals may be seen as somewhat inaccurate in their representations of persons with PWS as "exceptions to the rule," but in highlighting the abilities and accomplishments of these individuals as opposed to focusing on their challenges, such stories still serve to better demonstrate the full range of experiences of those with PWS and the positive impact they often have on their families and social networks compared to the more negative reports that focused solely on the problems encountered or created by those with the syndrome.

While our general predictions were supported, there were some surprises in the current research. We expected that, based on prior research on genetics and disability, the majority of media reports would focus on the more negative aspects of the syndrome, but we did not anticipate the extent to which this would occur, that there would be such distinct differences in the U.S. compared to international news sources, or that the medical information used to define the syndrome would be so outdated and inaccurate in so many of the stories. We had hoped, for example, to find that at least some stories might portray the variability of the syndrome, perhaps providing some comparisons to show readers that persons with PWS can possess a broad range of cognitive, social, and physical abilities and skills. Given the availability of recent research, stories, and other information on widely accessible databases such as PubMed and Google Scholar, websites such as those operated by the National Institutes of Health, as well as the website operated by the voluntary organization, PWSA(USA), we also expected that more authors would cite more current research and reports when describing the characteristics commonly associated with PWS, and would thus be more accurate in portraying and describing the syndrome, even if such reports ended up focusing on the more negative aspects of the syndrome.

We were also surprised at the nature of the differences between the U.S. and other sources — as noted above, many of the negative stories appearing in countries such as New Zealand, Canada, Scotland, and Singapore read more like sensational tabloid articles than legitimate news stories. These findings point to possible areas for further study, examining the agendas and sociopolitical contexts that could have shaped the differing representations. We suspect, for example, that at least some of the authors in these countries, while portraying the significant challenges of persons with PWS and those who care for them, may have been attempting to cast light on the lack of access to state-of-the-art treatments such as growth hormone therapy for individuals living in these countries. Specifically, in New Zealand, growth hormone therapy was not covered under their national health plan at the time of the study, indicating a possible media advocacy effort at work there. Finally, we were also surprised at the lack of coverage about the syndrome among other non-U.S. English speaking countries — since the syndrome is randomly occurring, affects people of all races and both genders, and is the most common known genetic cause of obesity, we expected more widespread coverage worldwide, but found instead that coverage in publications indexed as "major newspapers" in Lexis-Nexis was limited to a handful of countries. This finding points to another possible area of future research: examining factors which might limit media coverage of genetic syndromes such as PWS in other countries, and the potential impact of such a lack of coverage on awareness, education, diagnosis and treatment.

The stigma of obesity was also closely associated with negative portrayals of persons with PWS, and, while we expected such a trend to emerge, we were surprised at the extent to which the connection was demonstrated. Not one positive or mostly positive story profiled a person with PWS who was also characterized as obese, despite the fact that PWS is the most common known genetic cause of obesity. In fact, older individuals' successes were often specifically tied to an ability to stay thin in spite of the condition, emulating the "dieter as model citizen" phenomenon described by Pagliassotti (2003). As a consequence, readers of these articles are surely left to believe that those with PWS can be healthy and happy and function well only if they are able to maintain a "normal" or "healthy" weight. Furthermore, the portrayal of the fat person with PWS as deviant, as well as the oversimplifications in characterizing PWS as an "eating disorder" and those with PWS as "compulsive eaters" found in a number of the negative articles (mostly among non-U.S. sources) are cause for concern. Such characterizations only serve to establish and reinforce a victim-blaming discourse rather than to invoke empathy and understanding for those with PWS specifically, and obese persons in general.

In sum, in the articles included in this study, persons with PWS were stereotyped as victims, burdens, supercrips, heroes, deviants, better off dead, exceptions to the rule, and a combination victim/hero, which we are calling the "tragic but brave" stereotype. PWS was also frequently described along the medical model stereotype first identified by Clogston (1990), where the focus was on the illnesses or malfunctions caused by genetics. Many portrayals created a perception that persons with PWS are to be feared, pitied for their disability, admired for "beating the odds," or both pitied and admired, rather than loved and respected as empowered and equal individuals. As these findings are in line with media coverage of persons with disabilities in general, the current study serves to demonstrate that even persons with PWS, a genetic syndrome known for its complexity and variability, are likely to be characterized according to common disability stereotypes by the mass media rather than portrayed as unique individuals. Finally, our research serves to situate media coverage of PWS within the broader realms of media coverage of obesity and disability, providing a starting point for future study.

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