Challenging institutional stigma

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HealthWiki > Epilepsy and Seizures > Chapter 5: Acting against epilepsy stigma > Challenging institutional stigma

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In this chapter:

 

In this chapter:

• Chapter 5: Acting against epilepsy stigma
• Understanding epilepsy stigma
• Fighting stigma with support groups
• Raising community awareness
• Challenging institutional stigma

Many of the problems faced by people with epilepsy are resolved by accepting and learning to deal with the condition, and by educating families, neighbors, and friends about the realities of epilepsy. However, overcoming self-stigma and interpersonal stigma is often not enough to break through the barriers preventing people with epilepsy from getting the medical care they need, accessing education, finding fulfilling employment, and participating in many aspects of community life. For society to recognize that people with epilepsy have the same rights as people without epilepsy, we all have to challenge the harms caused by institutional stigma and discrimination.

Schools should not teach stigma

Engaging educational and community leaders in epilepsy education projects is a good way to ensure programs and policies that benefit children with epilepsy will continue. When school teachers, principals, administrators, and local politicians have some direct exposure to projects, they can speak up within school or government bodies about the importance of making schools work for children with epilepsy (see “Build trust and allies”). Invite them to visit or participate in your efforts so they will support and make permanent programs that challenge stigma and discrimination in the education system.

From stigma to science: Teachers learn about epilepsy

For many years, schoolchildren with epilepsy in the Indian city of Mumbai did not have their teachers’ support. Many teachers believed that a child with epilepsy was cursed or controlled by an evil spirit, or that seizures were a sign of laziness or lack of focus.

The epilepsy advocacy group Samman Association decided it was time to change these harmful ideas, fight stigma in the classroom, and bring epilepsy education to classrooms in their city. They launched a pilot epilepsy education program with middle school and high school teachers. It included a talk about epilepsy from a neurology (brain health and medicine) specialist, followed by a person with epilepsy sharing their experiences, and ending with a question-and-answer session.

Encouraged by the positive response, Samman expanded the program to reach 250 teachers in 12 schools within a few months. Then they approached the city leaders with a proposal to train teachers at every public school to recognize, support, and advocate for children with epilepsy.

Their project was approved just as the global COVID-19 pandemic forced schools to close. So Samman adapted their program to an online format with Zoom talks and WhatsApp groups where epilepsy information was shared, questions were answered, and harmful ideas were challenged.

The program reached 7,000 teachers in a year and a half, helping them to identify seizures (including an understanding that absence seizures are not the same as daydreaming), provide safe first aid (no spoons in mouths during a seizure!), and speak out against bullying of children with epilepsy. Through follow-up surveys, Samman found the program had succeeded in reducing stigma and improving education for children with epilepsy.

Advocacy to improve laws and policies

When people get their governments and health institutions to make laws and policies that recognize epilepsy as a disability, provide access to affordable medicines, and recognize everyone’s right to housing and employment, people with epilepsy are more likely to be treated with dignity, equality, and respect. If enforced, laws protecting people with epilepsy can hold people and institutions accountable for discrimination and prevent further mistreatment.

When you compare these goals to current conditions, they may seem like wishful thinking, but taking steps to get there over time is very realistic. By speaking up, organizing, and working together as a community, you can begin to advocate for changes in laws and policies, so they better support human rights.

How to start a policy advocacy campaign

Identify a problem to work on Talk to people with epilepsy, their families, health workers, parents of children with epilepsy, teachers, and others in the community to understand how institutional stigma and discrimination affect people. Work together to clearly identify the issue you want to change. For example:

• Are people with epilepsy denied the right to marry?
• Do mothers with epilepsy lose custody of their children after divorce?
• Are children with epilepsy kept out of school?
• Is epilepsy left out of disability rights laws?
• Are antiseizure medicines not covered by national health insurance?
• Are people with epilepsy not allowed to work?

Then, find out exactly what the laws say about these issues in your country. This information may be found on government websites, in libraries and public databases, or with help from lawyers, government officials, or advocacy organizations. Look for specific laws related to epilepsy, disabilities, education, employment, and discrimination.

Discuss what you find with the people you have spoken with already. As you narrow your focus to the issues that interest most people, organize them to take the next steps in the campaign you are getting off the ground!

Decide exactly what you want to change. Write down your goal. Be clear and specific. For example:

• Change existing marriage laws so epilepsy cannot be used as a reason for preventing or ending a marriage.
• Ban housing and employment discrimination against people with epilepsy.
• Enact a policy that requires training teachers to safely respond to seizures and support children with epilepsy in schools.
• Get the health ministry to include antiseizure medications in a list of essential medicines that should be included on the national health insurance list.
• Change disability laws to recognize epilepsy as a disability.

Gather stories and evidence. Collect information and stories that have to do with your chosen issue. Here are some ideas about what to gather. They are from a group working on adding antiseizure medicines to the approved list of medicines provided by their country’s national health system.

Protect the privacy of anyone who offers to share a personal story, to avoid putting them at risk of harm. Do not include people’s names or images in the evidence you gather, and assure them you will not give out information that might reveal who they are.

• Stories and personal experiences of how people with epilepsy have faced institutional stigma and discrimination at the hands of health organizations.
• Examples of how that stigma and discrimination have harmed their health.
• Examples of and information about how access to medicines or health care is inadequate or unaffordable. (Are medicines available? Are there clinics that can treat epilepsy?)
• Examples of how lack of access to antiseizure medicines has stopped people with epilepsy from working, participating in community life, or enjoying their lives.

Build trust and allies. The stories and evidence you gather will help your group convince others that a law or policy needs to be created or changed. People willing to support and stand with your cause can become your allies. They can help raise awareness, open doors to officials, and work to advance your goal. Their support makes it more likely that the government will pay attention to your cause.

Make a plan to connect, engage, and build trust with:

• epilepsy support groups.
• disability rights groups.
• health professionals.
• teachers and parents.
• religious and community leaders.
• women’s groups and labor unions.
• media workers.
• concerned community members.

Develop your message. Create clear messages that explain:

• the problem.
• why it matters.
• what you want to change.

You may want to prepare messages of different lengths: short, simple slogans that fit on a sign or leaflet, and longer messages that better explain why the change is needed. Find ways to share your message through community meetings, street theater, posters, leaflets, radio, or social media—whatever works in your area. When more people know and care, it will be easier to build support for change.

Talk to decision-makers.Find out who has the power to influence or change the law or policy you wish to work on, such as local health or education leaders, town council members or other government officials, or elected representatives at the local, regional, or national level. Request meetings to promote your cause, try to get them to commit their support, and follow up after the meeting to provide more information and remind them of your request.

Be patient and keep going. Policy change can take a long time. You may face challenges or delays from community members who do not fully understand the need for protections against stigma and discrimination, from institutions reluctant make changes in their policies and practices, and from government officials who do not want to provide resources or have conflicting interests. But by building support among allies and by being persistent, your struggle will keep moving forward. Support each other—the members of your group and your allies—and celebrate and share your achievements along the way. Tell the community about your progress, thank your supporters, and encourage others to act too. Every positive change can open the road for many more.

Advocacy improves life for people with epilepsy

Advocacy is about changing laws and policies to build a more just and supportive world. When people with epilepsy experience improvements in their lives and communities through policy changes, the message shifts from “you are a problem” to “you have the same rights as everyone else.” This message is a counterweight to all kinds of stigma. Here are just a few of many examples of advocacy efforts underway or already successful, from around the world.

In Kenya, the Kenya Association for the Welfare of People with Epilepsy is working with the government and the National Council for Persons with Disabilities to make sure people with epilepsy receive support through the legal recognition of epilepsy as a disability. We are also pushing for epilepsy care and antiseizure medicines to be included in the country’s National Health Insurance Fund, so more people can get treatment.

In Poland, our group of epilepsy advocates has successfully changed the law that says who is allowed to provide emergency care for people with epilepsy and other health conditions. Teachers and other bystanders are now legally allowed to give prescription medication—such as emergency medicine for seizures—if the person has it with them. This important change also requires training for teachers on how to respond in medical emergencies.

In Tanzania, we are challenging a law that allows a marriage to be annulled if one partner has repeated seizures. This law reinforces stigma and denies people with epilepsy the right to love and have a family. Through our Mothers On A Mission (MOM) Forum, people with epilepsy come together in support groups to share experiences, build confidence, and speak out for this change to the law.

In India, years of advocacy have led to the inclusion of epilepsy as a disability in the Rights of Persons with Disabilities Act, giving people with epilepsy access to educational and employment support, and protection from discrimination. Children with epilepsy now have the right to free education until age 18 and can get extra exam time and writing support.

Words matter: Changing the official word for epilepsy in Hong Kong

One of the three characters in the written word for epilepsy in Chinese translates to “crazy” or “mad” (癲癇症). In Hong Kong, this has led to people with epilepsy being viewed and labeled incorrectly, making their lives very difficult. Stigma carried in the word for epilepsy makes people fear they will be isolated or mistreated when they talk about their condition. It even prevents some people from getting medical help!

To change this, epilepsy support groups and health workers began to organize with civic groups and social impact organizations in Hong Kong.

They advocated for changing the word used for epilepsy to a more appropriate term that is both simple and clearly explains the condition. They campaigned at local and international conferences and through social media to make sure people understood the reasons behind the desired name change and would agree to use a new name.

They finally convinced Hong Kong’s health authorities, who introduced a new Chinese name to be used, one that highlights epilepsy as a brain health condition. The new name—腦癇症—translates to “brain seizure disorder.”

If the word for epilepsy in your language is harmful and you want to change it, here are some lessons from Hong Kong:

• Work with people with epilepsy, their friends and caregivers, health workers, and people in the government.
• Think of terms and names for epilepsy that are based on science and make it clear that it is a brain health condition.
• Collect possible new names from community members.
• Test your proposed name with people inside and out of the epilepsy community to find out if the new name and the reason for the name change make sense to them.

Having a new name for epilepsy will only make a difference if people learn it and start using it once a name is approved. Plan public education and awareness activities to make sure that the new name is adopted.

At every step of the campaign, those of us with epilepsy shared our stories so people would understand how difficult stigma makes our lives. Some of us spoke openly on camera and others preferred to remain anonymous. We created ways that everyone could participate safely.

Answer key to Epilepsy quiz: True or False?

These are the answers to the true or false quiz.

Epilepsy can be caused by a head injury.

True. Head injuries are one of the many causes of epilepsy and seizures, but sometimes no cause can be identified. (Chapter 3).

You can get epilepsy by touching someone who had a seizure.

False. Epilepsy is not contagious It does not spread by touching or being near a person who has epilepsy.

Seizures are a punishment from a past life.

False. A seizure is a temporary disturbance in the brain’s electrical activity It can be triggered by a variety of causes.

A woman who has seizures should not get married or have children.

False. Women with epilepsy can get married, become pregnant, and raise children just like anyone else (Chapter 7).

Epilepsy is a medical condition that can be treated with daily medicine.

True. There are many effective antiseizure medicines that control seizures in people with epilepsy (Chapter 4).

Rubbing animal blood on a person with epilepsy will help them heal.

False. Rubbing any blood on a person with epilepsy does not help and can cause infection or illness, especially if there are any cuts, scrapes, or open wounds.

Hammer nails into a person’s head to release the spirit causing seizures.

False. Epilepsy is not caused by spirits or demonic possession Hammering nails into a person’s head is very harmful It can cause bleeding, serious and permanent brain injury, or death.

People with epilepsy should not play sports.

False. People with epilepsy can play sports Focus on avoiding seizure triggers, taking safety measures, and training coaches and communities in seizure first aid. (Chapter 6).

A baby can develop epilepsy if the brain is injured during birth.

True. A baby who does not get enough oxygen or whose head is injured during birth may develop epilepsy or another brain condition.

Sharing food or dishes with a person who has epilepsy is dangerous.

False. Sharing food or utensils with a person with epilepsy cannot cause it to spread because epilepsy is not contagious—you cannot catch it from someone who has it.

Anyone can get epilepsy.

True. Epilepsy is found the world over, although inequality and [[structural violence make it more common in low-resource areas (Chapter 9).

A person having a seizure can swallow their own tongue.

False. It is not possible to swallow the tongue because it is connected to the bottom of the mouth A person’s tongue may fall back towards the throat during a seizure, as it does during snoring or sleep apnea, to temporarily block the airway.

Stress or trauma can sometimes lead to seizures.

True. Seizures can have psychological causes Not all seizures are caused by epilepsy (Chapter 3).

Smoke from burnt herbs will stop a seizure.

False. Breathing any kind of smoke will not help, but it can cause breathing problems or burns.

Rest, exercise, and healthy food can help control seizures.

True. Staying physically active, eating nutritious food, and getting enough sleep can help control seizures, especially when combined with the use of antiseizure medicine (Chapter 6).

Epilepsy can be caused by a curse.

False. Epilepsy is not caused by a curse, witchcraft, evil spirit, or spiritual illness Epilepsy is a brain condition that causes repeated seizures.

Rare forms of epilepsy can cause lifelong problems with speech, learning, and movement.

True. Several rare epilepsy syndromes can cause serious disabilities in young children (Chapter 3).

Put a stick in the mouth of a person having a seizure to stop them from biting their tongue.

False. Putting a stick in the mouth of a person having a seizure does not help and can cause serious injury (Chapter 3 and Chapter 4).

Sudden unexpected death in epilepsy (SUDEP) is a myth.

False. SUDEP is when a person with epilepsy dies without warning signs and no cause of death can be found (Chapter 3).

A baby can get seizures from a high fever.

True. A high temperature can cause a child to have a fever seizure (a “febrile” seizure) which is not epilepsy Help the child by using fever-reducing medicines (Chapter 3).

Some children “grow out of” having seizures.

True. When seizures start at a young age, they sometimes stop happening as children get older.

If a mother has epilepsy, her children will also.

False. Epilepsy has many causes and only rarely is it passed from parent to child (Chapter 3).

You can get epilepsy by kissing.

False. Epilepsy is not contagious and does not spread from person to person.

Some people can tell when they are going to have a seizure.

True. An “aura” warns some people with epilepsy that a seizure is starting When noticed, it can prompt the person to get to a safe place and sit down (Chapter 3).

This page was updated:19 May 2026