THE STIGMA OF EPILEPSY
Stigma is a word with a multitude of connotations and definitions.
The concept of stigma first gained popularity in social science research through the work of Erving Goffman. Erving Goffman the author of the (1963) book, (1) Stigma: Notes on the Management of Spoiled Identity defined stigma as an "attribute that is deeply discrediting and that reduces the bearer from a whole and unusual person to a tainted, discounted one.
It distinguishes differences and labels a person. Then undesirable characteristics are assigned to the labeled person. “Stigma exists when a person is identified by a label that sets the person apart and links the person to undesirable stereotypes that result in unfair treatment and discrimination which leads to unequal outcomes.
The so Labeled persons are placed in distinct "us" versus "them" categories.
However all parts of Stigma are a matter of degrees and some characteristics are more prominent than other.
Although few studies have been conducted to explore the experience of stigma in children and adolescents with epilepsy, it appears that these involved do worry about the problem and that this worry can affect their emotional development. In a study of children with new-onset seizures and their parents, concerns about stigma were top of the list. Children reported feeling different from their peers and fearful of being teased about having a seizure in front of their friends.
There was in one study of adolescents with epilepsy, even the belief that the stigma of epilepsy was associated with poor self-esteem .
Overall, few adolescents in the general population were familiar with epilepsy. Furthermore, respondents knew so little about epilepsy that most either did not know or were not sure about 7 of the 12 knowledge items in the questionnaire. Other findings showed that adolescents with epilepsy face an uncertain and possible hostile social environment. Many respondents thought that epilepsy was contagious or a form of mental illness and children or adolescents with epilepsy might be socially isolated as a result of peer ignorance.
Perhaps the best weapon in combating stigma is education. "As with any illness, there is fear surrounding the unknown. There used to be a stigma attached to asthma, but through education the myths were dispelled. That is what needs to be done with epilepsy. One important addition to educating the public about epilepsy is personal contact with the stigmatized person. This is so that the person is seen as an individual and not as a person with a mental illness. The fear many people have is that the person with Epilepsy may have a seizure and they won’t know what to do. First Aid training is an important step in eliminating this fear.
Some examples of misunderstandings about epilepsy from around the world:
In Cameroon it is believed that people with epilepsy are inhabited
by the devil. This does not mean that they are seen as evil, but
that evil invades them and causes them to convulse from time to
time.
In China, epilepsy diminishes the prospect of marriage, especially
for women. A survey of public awareness in 1992 revealed that 72% of
parents objected to their children marrying someone with epilepsy.
In some rural areas of India, attempts are made to exorcise evil
spirits from people with epilepsy by tying them to trees, beating
them, cutting a portion of hair from their head, squeezing lemon and
other juices onto their head and starving them.
In Indonesia, epilepsy is often considered as a punishment from
unknown dark forces.
In Liberia, as in other African countries, the cause of epilepsy is
perceived as related to witchcraft or evil spirits.
In Nepal, epilepsy is associated with weakness, possession by an
evil spirit or the reflection of a red colour. Bystanders who
witness a seizure will often spray water on the forehead of the
person experiencing the seizure of make him or her smell a leather
shoe.
In the Netherlands in 1996, a person was whipped and put into
isolation because her seizures were thought to result from magic.
In Swaziland, many traditional healers mention sorcery as the cause
of epilepsy.
In Uganda, as in many other countries, epilepsy is thought to be
contagious and so people with epilepsy are not allowed to join the
communal foodpot for fear of others contracting epilepsy through
that person's saliva.
Legislation
In many countries legislation affecting people with epilepsy has
reflected centuries of suspicion and misunderstanding about
epilepsy. For example, people with epilepsy are often prevented from
marrying or having children:
In both China and India, epilepsy is commonly viewed as a reason for
prohibiting or annulling marriages.
In the United Kingdom, a law forbidding people with epilepsy to
marry was repealed only in 1970.
In the United States of America (USA), many individual States
prohibited people with epilepsy from marrying. The last State to
repeal this law did so in 1980.
In the In the United States of America (USA), 18 States provided
eugenic sterilisation of people with epilepsy until 1956. Until the
1970s, it was also legal to deny people with seizures access to
restaurants, theatres, recreational centres and other public
buildings.
Employment
Unemployment and underemployment exist worldwide, but more so with
people with epilepsy. The misunderstandings and stigma mentioned
previously are usually to blame for this. For instance:
A survey in China showed that 31% of respondents believed that
people with epilepsy should not be employed.
Data from Germany, Italy and USA indicate that people with epilepsy
of working age, 40%-60% are employed (although these jobs are often
below their potential), 15%-20% are unemployed and about 20% retire
early.
In rural areas of India, people with epilepsy are generally looked
after by their families and they usually help with their family's
trade, although this will be with fewer responsibilities and less
strenuous roles than "normal" people.
In a recent research survey, nearly a quarter of Nepalese people
with epilepsy took the view that they were unable to work. As in
many countries, these people with epilepsy had been culturally
conditioned to underrate themselves.
Treatment
Misunderstandings about epilepsy, combined with the economic and financial barriers to availability of treatment in developing
countries, play an important role in preventing treatment becoming available to millions of people in developing countries. For
example, culturally informed health-seeking strategies often lead the majority of people with epilepsy in developing countries to turn
to traditional healers for treatment.
Economic aspects
In 1990, WHO, identified that, on average, the cost of the anti-epileptic drug phenobarbitone (which alone could be used to control
seizures in a substantial proportion of those with epilepsy and which is on the WHO list of essential drugs) could be as low as US$
5 per person per annum.
The World Bank report "Investing in Health" (1993) states that, in 1990 epilepsy accounted for nearly 1% of the world's disease burden.
Epilepsy commonly affects young people in the most productive years of their lives, often leading to avoidable unemployment. The Americans with Disabilities Act (ADA) is a federal law that prohibits discrimination against individuals with disabilities. Title I of the ADA covers employment by private employers with 15 or more employees as well as state and local government employers of the same size. Section 501 of the Rehabilitation Act provides the same protections for federal employees and applicants for federal employment. In addition, most states have their own laws prohibiting employment discrimination on the basis of disability. Some of these state laws may apply to smaller employers and provide protections in addition to those available under the ADA.
Key points
The cost and burden of epilepsy varies between countries.
The anti-epileptic drug phenobarbitone can cost as little as US $5/person/annum and can be used to treat many people with epilepsy.
People with epilepsy continually face social stigma and exclusion. A fundamental part of ridding the world of this stigma is to raise public and professional awareness.
Legislation which reinforces fear and discrimination must also be changed.
The Americans with Disabilities Act (ADA) is a federal law that prohibits discrimination against individuals with disabilities. In addition, most states have their own laws prohibiting employment discrimination on the basis of disability. Epilepsy is a disability when it substantially limits one or more of a person's major life activities. And may be a disability because of limitations that occur as the result of seizures or because of side effects or complications that can result from medications used to "control" the condition. http://www.eeoc.gov/facts/epilepsy.html
