/Epilepsy 1989;2:115-116 0 1989 Demos Publications

EFA Commentarv J

Half full-or half empty? The most recent Gallup Poll (1987), sponsored by Parke-Davis to measure knowledge of epilepsy among Americans, offers us numerous opportunities to ask that classic question. In many respects, the numbers are getting better. The level of knowledge is rising. But, as James LaMartina notes in his review of the poll (IEpilepsy 1989;2:45-B), misconceptions persist. Not only that, but they appear to be far more entrenched among some segments of the population than others.

On the positive side, hefty majorities of those sam- pled agreed that people with epilepsy can and should work in positions of trust and responsibility-super- vising us at work, handling our food, teaching our chil- dren, and making our laws. However, the public was considerably less sanguine about their defending our country or driving our buses. Fully two of three per- sons turned thumbs down on the driving issue, sug- gesting that a majority of the public does not fully ac- cept the idea that long-term, reliable seizure control is attainable. Still, the overall impression is one of great- er willingness to accept epilepsy within the work- place.

It is also encouraging to see that 51% of those ques- tioned could correctly identify at least one of the pos- sible causes of epilepsy, that 92% have heard of the condition, and that 92% reject (“somewhat”or”strong- 1~“) the notion that people with epilepsy are danger- ous.

So far, so good. But a closer look at the demograph- ic breakdowns reveals some stark contrasts in beliefs and attitudes among people of varying income and educational levels. Not that this is an unexpected result. People with more education might be expected to know more in a general way about most health conditions, especially with the current media interest in health concerns. But since misconceptions about epilepsy are so often a source of pain and social isola- tion to those who have it, the sharp variances in knowledge and attitude between social groups has particular significance for health educators and health professionals.

For example, the linking of epilepsy with mental illness is a long-standing complication of epilepsy’s social impact. In answer to Gallup’s question, “is

epilepsy a form-of mental illness?” 9 of 10 college graduates and those in the top income bracket ($40,000 and above) said “No.” But the number of people who think it is grows steadily as education or income level declines. Among those whose income is less than $10,000 a year or who did not graduate from high school, as many as one in three either believe epilep- sy to be a form of mental illness or are unsure enough about the answer to say they don’t know. Of identified racial and ethnic groups, 38 of 100 black respondents said epilepsy is a form of mental illness. Twenty-two of 100 Hispanic respondents answered the same way. This belief appears to be underscored in a question relating to treatment of epilepsy, in answer to which almost one in five (19%) among these groups cited psychotherapy as an appropriate treatment for the condition.

Furthermore, about 20-25% fewer respondents among these segments of the population supported the employability of people with epilepsy in respon- sible jobs. A similar percentage felt people with epi- lepsy could be identified “just by looking at them,” that they should not have children (21%), and that people often die from epileptic seizures (52%). These responses suggest either that the experience of epi- lepsy is somehow different among these groups or that an outdated view of the condition prevails and greater educational efforts are needed.

Similar demographic comparisons of responses to other parts of the poll reveal an interesting paradox, however. The number of perceived stigmas (as meas- ured by responses to the statement that having epi- lepsy “makes others think less of you and your fami- ly”) is apparently lower among the very groups who hold a more negative view of the etiology and prog- nosis of the condition and higher among those same well-educated and well-paid individuals who in most other respects express a more positive view.

Among all respondents to the statement: “Having epilepsy makes others think less of you or your fami- ly,“one-third felt that it did-a disappointing result in itself. But if we can regard an affirmative answer as a reflection of perceived stigma, then we find the levels highest among those earning over $40,000 a year. Forty-one percent of this group (and 39% of the male

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EFA COMMENTARY

respondents overall) agreed with the statement; 56% disagreed. Among those earning less than $10,000, only 27% perceived epilepsy as reducing social ac- ceptance.

How are we to regard these results? Do the higher rates merely show that a more informed individual is also more informed about the true nature of stigma in the surrounding culture? Or is it that those with high- er social position (if we equate income and education with social standing) feel more vulnerable to any variation from the ideal? Or is stigma associated with epilepsy actually more virulent among the more af- fluent segments of society? These are not new ques- tions, of course. They have been raised and debated by the professionals working in this field for many years. The interesting thing is to find them still there, lurking behind the most recent statistics, challenging us once again to do something about them.

Ambiguity, however, is not a feature of the re- sponse to Gallup’s question on first aid. In distres- singly large numbers, Americans of all social levels would consider themselves behaving appropriately by putting “something hard” in the mouth of some-

one having a seizure. Almost 7 of 10 (68%) think this is the right thing to do. While there is some variation demographically, the numbers are much closer than in the other areas cited. The lesson is unmistakable. The Epilepsy Foundation of America, the teaching profession, and just about everybody in the health and helping professions must find a way to eliminate this widely held belief. Somehow, some way, we must communicate the simple idea that, when it comes to seizures, sticks, spoons, and other unyield- ing objects are not instruments of mercy.

The Epilepsy Foundation of America was pleased to have had the opportunity to offer suggestions on content to framers of this latest Gallup Poll and its sponsor, Parke-Davis. We hope that similar snap- shots in time will be taken in the future so we can con- tinue to track what our society knows about epilepsy and thinks about the people who have it. The current poll shows us a number of areas in which more edu- cation, and, perhaps, more targeted education, is needed; future ones will help us to see to what extent those efforts bear fruit.

116 J EPILEPSY, VOL 2, NO. 2, 1989