Hesperian Health Guides
Community action makes change happen
Few governments acknowledge and ensure peopleâs right to health, including people with epilepsy. That is why working with neighbors, places of worship, community organizations, and local schools and health centers is more likely to bring quicker results, as well as to build the support necessary to achieve larger changes at district, state, and national levels. Community education about epilepsy and seizures, and how to respond with seizure first aid, can help normalize the discussion of epilepsy. By talking with our local health workers, we can challenge our health promoters, nurses, and midwives, as well as our doctors, to learn how to treat people with epilepsy and make epilepsy treatment part of primary health care.
We can make sure our local institutions, schools, markets, and services welcome rather than discriminate against people with epilepsy. As our societies become more accepting and better incorporate people with epilepsy into community life, the number of people concerned about equality for people with epilepsy grows. As we gain more power and influence, we can have a bigger cultural impact, especially in challenging the misinformation and stigma surrounding epilepsy. We can also demand our health systems plan for and make more and better services available for people with epilepsy, including access to affordable medicines.
From raising a child with the skills to reject feelings of self-stigma, to participating in support groups, to campaigning for local and national changes, you will find examples throughout this book (especially in Chapter 6 and Chapter 9) of how individuals and groups began working to improve conditions for people with epilepsy both inside and outside of their communities.
Preventing epilepsy
It can be challenging, and sometimes impossible, to determine the cause of a personâs epilepsy. This makes epilepsy prevention difficult. Sometimes epilepsy is âgenetic,â caused either by genes inherited from a parent or by a mutation (a sudden change) that could be random or caused by something in the environment.
The cause of epilepsy for many other people is more evident: a violent injury to the head. Preventing those injuries, caused by crashes and transit accidents, dangerous workplaces, war and conflicts, domestic violence, contact sports, etc., is one way to prevent epilepsy. Another way to prevent epilepsy is to change the social conditions that make injuries more likely: the harms (structural violence) caused by poverty, gender discrimination, lack of access to food, shelter, and education, and other social causes. Recognizing health care as a human right, so infections do not go untreated and cause epilepsy, is another important way to prevent epilepsy. And guess what? Making changes like these will improve life for everyone, not just people concerned about epilepsy.
Working with others on any of these issues is also an opportunity for them to learn about epilepsy and change attitudes produced by epilepsy stigma. While making the community better for everyone, the community will become more open to people with epilepsy.
Adapt this information for your community
This book features stories of people with epilepsy shared in their own words, as well as stories adapted from real-life experiences. The examples of community action are not made upâthey show how real organizations responded to their specific needs and conditions. We hope they inspire you. Do not just copy them and try to do the exact same things. Instead, adapt them to your situation and strengths.
We want your feedback
Please write to us with your thoughts about what you found useful in this resource and, perhaps more importantly, what you did not agree with or what you tried that did not work. We would love to hear about your experiences organizing for better care for people with epilepsy and seizures, and to share your wisdom in future editions or publications. Contact us at [email protected] to tell us what you think.