The following is a manuscript accepted for publication by the peer – reviewed journal, World Journal of Neuroscience . It was withdrawn for funding reasons but is presented below with slight modifications. Reader reactions to an internet news article are examined for stigmatization of persons with epilepsy. Evidence for a public understanding of the mental issues surrounding epilepsy is also evaluated.
Abstract
Electronic media can be a source for stigmatization for people with epilepsy. A case example of a blog is analyzed for the presence and nature of derogatory remarks by readers. I evaluate reader commentary on an internet blog pertaining to a government employee’s auto accident caused by a seizure. Comments are classified as stigmatizing to people with epilepsy, politicians, police, or none of the above. Evidence for familiarity with non – tonic – clonic seizures is sought. Comment approval ratings are evaluated. Commentary is found to be hostile to public officials, generally, but less so for people with epilepsy. Evidence for public knowledge of non – tonic – clonic seizures appears to be lacking. From comment tone, it is argued that stigmatization arises for people with epilepsy even when they are not explicitly referenced. Commenters frequently consider a seizure to be a fraudulent explanation for the accident. This misconception might be enhanced by not considering epilepsy to be a mental illness.
Key Words
Stigma, social media, blog, mental illness
Introduction
Epilepsy has been called the prototype of stigmatizing conditions1. Researchers have studied sufferers’ perception of stigmatization across cultures, and research methodologies have historically and principally involved surveys, interviews (e.g. 2,3,4,5,6) or more indirect measures using indicators such as employment, marriage, or other quality of life measures7,8. Media databases also provide access to numerous articles depicting epilepsy and its stigma 9, as has the world wide web10. However, a study that is rarely possible to carry out is an assessment of enacted social stigmatization arising from an event at the time of its occurrence. Using the globally accessible internet, the open forums allowing people to record their opinions on events covered by the media (blogs), and also chance opportunity, one can examine the direct stigmatization of individuals with epilepsy11.
The internet records spontaneous expressions relatively unfiltered by the personal inhibitions someone may have when completing a survey. People commenting on the web typically do so in an anonymous manner involving no face – to – face contact with a discussion member or researcher. Below, I examine the online reader commentary regarding a news report of a United States government official causing an automobile collision in San Gabriel, California. His actions were likely due to a seizure.
As reported by Dylan Stableford in the internet blog, The LookoutI,* former United States Commerce Secretary John Bryson caused two separate automobile accidents within a span of some minutes in June, 2012. Secretary Bryson first struck a vehicle from behind which was stopped at a railroad crossing. He reportedly got out of his car and spoke with passengers in the car that he had struck. He got back into his car, struck the same car a second time while leaving the scene and then struck another car. After striking the second car, he was found unconscious by police when they arrived at the scene.
The following day, the Commerce Department stated that Bryson had suffered a seizure. He had shown no evidence of intoxication by drugs or alcohol. During the event, Bryson’s behavior could readily have been explained by a simple seizure that eventually generalized, just as the Commerce Department reported. Regardless of the true cause of Bryson’s odd behavior, the reader commentary on this early account provides a look at the presence of stigma towards epilepsy as well as the general knowledge of commenting Yahoo readers of the cognitive effects of seizures.
Methods
This peer reviewed account follows the exact methodology of an earlier, self – published study (i.e. Tacking on the Styx) with one key exception to assembling data and one key additional analysis described further on. Text within lines is quoted from [11].
I downloaded Stableford’s text titled U.S. commerce secretary cited for felony hit-and-run; Bryson ‘suffered a seizure,’ agency says, along with the subsequent reader commentary from the aforementioned website (commentary no longer appears online). Blogs of this kind commonly have a top “tier” of reader comments in which readers might address one another’s input by their blogging name if they desire. Readers also have an option to make replies to a specific comment immediately below it and indented to it in a nested, secondary tier. I only included top – tier comments in analysis. From this tier, I copied the ID and statement of the first person chronologically appearing on the conversation thread and pasted them into a spreadsheet. I then did the same for the next new individual. Once an individual person’s first comment was recorded, all subsequent remarks made by that person were omitted. In this manner, I recorded the first statement of the first 100 individuals who made comments on the article’s main comment thread.
Like many blogs, The Lookout allows readers to express approval or disapproval of other persons’ remarks (i.e. thumbs up / down). I recorded the numbers of thumbs up and down, respectively, received by each remark.
Comments were then placed in chronological order into a spreadsheet questionnaire. The columns to the right of the comments posed questions as a checklist for several non-exclusive and subjective categories. Did the comments:
- Derogate people with epilepsy;
- Derogate politicians;
- Derogate law enforcement officials?
As pertained to the cause of the accidents, did commenters:
- Express a belief that seizures could plausibly cause the incident;
- Suggest or express a belief that Bryson was influenced by drugs or alcohol;
- Display any familiarity with peri – ictal confusion or non – tonic – clonic seizures (or non – grand mal)?
In the non-peer reviewed analysis, I placed comments into the above categories myself. In order to make these current categorizations, the spreadsheet containing the ID’s and comments (but not the reader approval ratings) was given to three individuals to judge. Each person had some familiarity with epilepsy. Two judges were women. One woman was a retired nurse. The other was a retired teacher and woman with epilepsy. The third judge was a retired electrical engineer and the male spouse of the woman with epilepsy. All individuals resided in Boxford, Massachusetts.
I asked them to checkmark as many of the above categories as they felt applied to each remark. They could also leave all categories unchecked if they felt it was appropriate to do so for a given comment.
As with any conversation, verbal or online, the perceived tonality (e.g. sarcasm) of a comment might depend upon those preceding it. Hence, I also instructed them to consider each reader comment in the context of all remarks, not as a stand – alone datum. I allowed them to revise their categorizations however they saw fit and work privately at their own pace. I verified that they had not read the self – published analysis.
The final categorizations used in analyses were done in two separate manners. Derogations of the three categories of individuals are presumed to be chiefly emotional phenomena. There is no defined number of offended persons for which stigmatization becomes significantly problematic. With this uncertainty in mind, I used a lax criterion for defining an insult. One judge’s categorization of a comment was sufficient to label the comment as derogatory.
Categorizing a comment as showing the reader to be accepting of the plausibility of the seizure or to be aware of non – tonic – clonic seizures requires the commenter to exhibit perceivable knowledge. How the comment is perceived by a person with epilepsy is immaterial. Further, the test before the judges was not to witness to an emotional response. Hence, two or more judges had to check off these categories before I cited them as truly applicable. I contend that judging derogation should err to a relaxed standard, whereas judging knowledge should err to a stricter one.
Whether or not a comment pertaining to the likelihood of intoxication is intended to derogate someone is not always clear. There can be appeal to emotion, or the comment might only pertain to knowledge. Thus, I present results defined both ways – using one judgement or a majority of judgements (referred to as ‘lax’ or ‘strict’ in Table 1).
Well over 3,500 remarks were made on this blog thread raising the question of why I examined those of only 100 distinct individuals. First, I wished to avoid accounting for a speculative “herd mentality” where the number of preceding comments of either a derogatory or non – derogatory kind begins to affect people’s behavior substantially. Originality in thought had a general appearance of tapering off before the 100th person gave a comment.
Second, a meaningful source of information pertaining to stigma was the comment ratings. However, a large percentage of people will rate a few comments (presumably those made closest to the posting time of the blog text), while some smaller percentage will probably carry on rating deep into a comment thread (i.e. closer to the present time). At some point, one likely falls into a strong pattern of resampling specific individual’s appraisals. Using a cut-off point of 100 began as a largely intuitive compromise between assessing comment originality and avoiding redundancy in a speculatively small number of persons repeatedly rating comments as one charts further into the comment thread.
Results
Figure 1 displays reader activity. It suggests that a sample set of 100 comments is a reasonable maximum. The amount of redundancy of individuals judging comments that is probably reflected in the flattening of the curve of approvals and disapprovals over time is concurrent with a sharp decrease in the critiques per comment. Therefore, to whatever degree of redundancy exists in persons making ratings, it should not greatly influence the conclusions of the study. Figure 1 shows that the sample size of individuals assessing at least some comments was no less than 212 (the total for the 43rd comment).
Ninety percent of comments derogated officials, and politicians in particular. All but one of the 15 comments seen as derogating people with epilepsy also derogated politicians.
The differences between disapprovals and approvals of derogatory comments gives additional insight into the way people perceive the incident as a whole. Approvals for derogatory remarks and remarks insinuating or specifying intoxication significantly exceed disapprovals of the same by never less than two and one half times across categories.
Reactions of readers to disparaging comments for both politicians and law enforcement overwhelmingly approve their derogation. In both instances, differences between approvals and disapprovals are highly significant and remain so when comments are subsampled to separate politics from law enforcement (Table 2).
Fifteen percent of individuals (lax) and 13% of individuals (strict) suggested that Bryson suffered some intoxication, though the report specifies that he did not. The same approval / disapproval pattern as for more purely derogatory comments arises and, again, there is high statistical significance for both criteria used. Fewer than ten percent of comments acknowledged a possibility that seizures might have caused Bryson’s behavior and there was no statistical difference between approvals and disapprovals (Table 1).
The text of all comments and judges’ classifications are available at this link. Here, I give some examples. Some comments make no direct and explicit derogation of people with epilepsy, but they are still particularly vicious in tone. One example is the following:
drunk sobered up long enough to hit 2 cars, like Kennedy the murderer he gets off until Karma comes a knocking at his door… Dead head Ted on a beach
The comment refers to the late Senator Edward Kennedy’s car accident at Chappaquiddick Island, Massachusetts, in 1969. Kennedy showed some erratic behavior due to a concussion. He was incorrectly presumed by part of the public to have been intoxicated. Kennedy’s passenger, Mary Jo Kopechne, lost her life.
Other comments can be seen as derogating epilepsy by way of insinuating fraud – again, in a particularly vicious manner. Below is one of the comments classified as derogatory to people with epilepsy:
Yeah Right..He has a “Medical Condition” Its called STUPID!! What a Jackasss (sic)
Another one, not classified as anti – epilepsy by any of the judges but what I still call pro – fraud is:
Sounds like code for he was drunk as hell when we stopped him to me.
These comments do not single out persons with epilepsy as a group to derogate, but their ignorant references to intoxication and their sheer hostility in tone lead to such an insult nevertheless. Again, the word ‘code’ signifies fraud.
Discussion
No quantifiable null hypothesis exists for how much approval to derogatory comments constitutes stigmatization for the three categories of persons or for comments regarding intoxication. Furthermore, one does not know how representative The Lookout’s readership is of the general population nor how representative the commenters are of the readership. However, these statistical and demographic uncertainties do not matter greatly. What matters is the absolute prevalence of negative commenting to the whole story, the expressivity of particular commenters, and the proportion of derogation aimed at each demographic group.
The commenting readership of The Lookout cannot be presumed to represent a cross – section of society, American or elsewhere, but it, and media like it, are very much part of the social environment of patients. Thus the blog deserves examination as its own entity as well as for how it may serve as a reflection of society generally. It’s comment section can best be described as a repository for animosity (the reader is encouraged to scan the data set to affirm my description).
If there is reason to place hope in education for lessening the vitriol found in this blog, it is the fact that belief in the plausibility of seizures is either low, under expressed, or both. The approvals and disapprovals for such comments, albeit low in number, differ insignificantly. Hence, better education might reap benefits.
Before education will likely lower the perception of fraudulence perceived, the medical community must take a more results – oriented, phenomenological perspective about what epilepsy actually is.Within medical literature and online media, epilepsy is explicitly excluded from being a mental illness (e.g. 6, 12 – 16) implicitly excluded by virtue of being referred to as frequently comorbid with recognized mental pathologies17 or not mentioned where it might be both appropriate and useful to do so (e.g. 18). Some of epilepsy’s sequestration no doubt comes not so much from science but from doctors’ conscious avoidance of the somewhat distasteful history of the epileptic personality concept11.
David Bear and Paul Fedio formalized the long – standing concept of the epileptic personality in the late nineteen seventies19 by creating a schema of personality traits for temporal lobe epilepsy, the breadth of which could accommodate much of humanity. Their work was mathematically impressive and operationally suspect11. It was also published during a continuing time of racial sensitivity in America. In America, both racism and the bigotry aimed at people suffering from epilepsy geographically correlate7, a point from which one might infer a commonly depraved perception of human psychology. This coincidence may give doctors another reason to shy from any possible source of stigmatization such as calling it a mental illness.
The concept of the epileptic personality has largely been dismissed whether by scientific advancement, lack of clinical usefulness, social sensitivity, or all three. However, its dismissal leaves behind a public misunderstanding of the disease as well as a void in behavioral therapy. This void is problematic for the patient, as epilepsy is replete with socially discomforting automatisms, aurae, psychoses, and cognitive disturbances11,21 not all of which manifest around an obvious seizure11,22. In my personal life experience, and quite likely the lives of many other sufferers, the disease has become a Boolean phenomenon to those without the disease. One is either convulsing, or one is normal. This perspective not only obstructs good behavioral care, but it distorts public perception. The gray zone that must be understood by the public in order to view Secretary Bryson’s episode in proper context no longer seems to exist, if in fact it ever did. As Hustvedt discusses23, both medical and popular perception of the disease is hampered by Cartesian dualism, a cousin to a Boolean state of being. This dualism is a stubborn relic of the Abrahamic religions which are too frequently inspirational for hatred within Western and Near Eastern cultures.
Scambler and Hopkins21 proposed categorizing stigma as felt versus enacted. The perception of reader response to Stableford’s blog can be well understood with their approach. However, I also propose stigma being considered ‘explicit’, ‘implicit’, and ‘emergent’ for written media, whereby the first two modes come from an individual person’s purposeful actions (‘implicit’ being to actively insinuate), and emergent stigmatization arises from a group dynamic. Said dynamic can be found in the blog’s overwhelming negativity within both comments and ratings towards police and politicians. I have a general perception that readers clearly perceive seizures as a fraudulent explanation, and therein might lie one type of emergent source of the felt stigma of Scambler and Hopkins. A Boolean perception of epilepsy fosters the concurrent perception of fraudulence which is very evident within the overt hostility of The Lookout readership.
The prevalent insinuations and explicitly stated beliefs that Bryson was intoxicated and their high approval can be considered enacted stigma among comments. Again, they simultaneously represent a perception of governmental fraud in reporting the cause of the incident. They also demonstrate a misperception of epilepsy as a Boolean condition. “He had to have been intoxicated as seizures just knock a person out,” would be the narrative.
A study surveying Twitter10, found 9% of tweets pertaining to seizures to be derogatory. This study used a much larger but quite different data source and search method. It found little derogation associated with the term ‘epilepsy’ unlike posts referencing seizures. Metaphors, personal accounts, and informative tweets were all more common than ridicule. Here again, this study provides no strong expectation for an increase in stigmatization being brought about by shifting the public perception of epilepsy to be a mental illness chiefly characterized by seizure occurrence. Seizures attracted more stigmatization than did epilepsy on Twitter, and my own analyses pose no argument to the contrary.
Epilepsy has also been called a bridge between neurology and psychiatry24. However, I contend that the notion that epilepsy is not a full mental illness is now, and always has been, epistemologically vacuus. Epileptology has evolved from the phenomenological to the cytological in many people’s scientific perspective. This evolution has partially eclipsed the proper role of medical practice (as opposed to medical science) which is to be results – oriented. For some patients, ictal brain activity might start in the parietal lobe, for example, and frequently remain there so far as it can be detected, tempting some doctors to label it non-cognitive. This assumption is not conservative in any sense for a swiftly changing network, ergo such a label should immediately be suspect. Consider, also, that the amnesia that can accompany temporal lobe epilepsy would qualify as a diagnosable mental illness, in and of itself, in the absence of an epileptiform EEG pattern.
The DSM – 5 is a great improvement from older versions in that it lists various psychoses within epilepsy. However, the disorder index in the back of the volume jumps from ‘enuresis’ to ‘erectile disorder’. To a patient, like myself, this gap is quite curious. With no offense intended to Hans Christian Andersen, one of the most tired cliches in the English language pertains to the Emperor’s wardrobe. However, what else is a concerned patient to resort to when ‘erectile disorder’ has status in the DSM, but epilepsy does not? Truly enough, erectile disorder can have a psychiatric cause. Nevertheless, it can also come about via an extreme case of Peyronie’s disease. This dual mode of causation does not preclude its listing. Epilepsy, by contrast, is exclusively a product of neuronal activity which is very frequently psychiatric in its repercussions. No parallel cause sensu Peyronie’s disease exists. In this regard, the logic applied to inclusion in the DSM – 5 is inconsistent and dysfunctional.
In simplified terms, the DSM – 5 proposes that epilepsy is not a mental illness except when it is. This perception on the part of the public might have little impact in changing the emergent stigmatization from events like Bryson’s accident. The readership comments upon seizures rather than upon epilepsy. This paroxysm focus could provide some leeway for shifting the public’s classification of epilepsy, the disease, to a chronic mental condition with intermittent, non – Boolean, cognitive impairment as well as more recognizable seizures. Such an evolution should minimize the risk of incurring additional stigma as a mental illness, though this point admittedly requires discussion.
A better results – oriented perspective might be that epilepsy is a mental illness except when it is not, and the concurrent burden of proof of it not being so should be high. When such a perspective subsequently permeates into the media and general public, the hostility directed at any party within a blog such as The Lookout might abate somewhat in the longer term. Bryson’s political status strongly influences the results of this study. Nevertheless, The Lookout readership shows an underappreciation for the behavioral effects of seizures, specifically, and epilepsy generally. I fear that the DSM – 5 is too finessed to affect public perception. Tackling the emergent perception of epilepsy as being a fraudulent explanation for unusual, consequential behaviors requires a bolder long – term approach. The possibility that stigma could be increased, and that my proposal could work contrary to its intent is real. However, this risk should not preclude discussion among recruited patients and physicians on a results – oriented classification of epilepsy.
Jeffrey Lee Hatcher
how you can help. The Committee of Fifty (1912)
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Tacking on the Styx 