Epilepsy Stigma

Thesis Question:

What stigma exists about people with Epilepsy and what negative effects do cultural stigmas have in the life of a person with epilepsy, including access to secondary education and competitive employment? Additionally, what can be done to reduce this stigma by disability advocates and what can an individual do to counteract or reduce stigma when seeking employment.

Plan:

1. Why is this question interesting to you?

In my line of work, I’ve witnessed the injustice, and lack of equality and fairness that people with Epilepsy experience in life. One of these instances is in finding competitive and meaningful employment and the steps helpful in seeking employment. Even though Epilepsy is not always visible, disclosing even one episode can change almost every aspect of a person’s life. Societal misunderstanding and ignorance support negative views that make others feel afraid, thinking that the person is sick, frail, contagious or dangerous. Every aspect of a person’s life is likely affected including relationships with family and friends, educational opportunities, treatment as a person and being an accepted and valued member of their community.

2. What you expect to find and why?

I expect to find that epilepsy remains stigmatized in this country. The ignorance and misinformation that still exists negatively affects a person’s ability to be part of the community in which he lives. I expect to find these societal beliefs, true or not true, can affect almost every aspect of a person’s life including their access to learning and knowledge, ability to support themselves, sense of independence, self-esteem, self-worth, relationships and value as a person. Furthermore, on a societal level, I expect to find that limiting people with epilepsy from the workforce excludes capable individuals from contributing their skills and knowledge to businesses and organizations, and, in a greater sense, to the larger community.

3. What resources and assistance do you think you will need?

Resources needed may include:

o Laws and legal guidelines (ADA), legislation about the employment of people with disabilities and human resource hiring practices;

o Access to peer reviewed articles via the library or by permission;

o Similar research done by individuals and organizations;

o Data available from Advocacy and Self-Advocacy groups found in writing or by interview;

o Personal interviews to document an individual’s personal experience and anecdotal information to support evidence, if possible (it may be difficult to obtain factual information directly by interview because people are not