Sharp Waves: ILAE's epilepsy podcast
Sharp Waves: ILAE's epilepsy podcast
Changing the term for "epilepsy" in Malaysia: Why and how? Dr. Chong Tin Tan
Some historic names for epilepsy have been derogatory and stigmatizing. An older term for “epilepsy” in Malay means “mad pig disease.” Neurologists in Malaysia collaborated to change the word to a medically accurate term. Sharp Waves spoke with Dr. Chong Tin Tan about the origins of the older term and how the new term was introduced.
Resources:
Name of epilepsy: Does it matter? - 2012 - Neurology Asia
Announcement of a new Chinese name for epilepsy - Lau - 2011 - Epilepsia
Renaming Korean epilepsy: Where are we? - Epilepsy & Behavior
Overcoming the stigma of epilepsy in Asia // International League Against Epilepsy
Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.
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[00:00:00] Rachel Lea: Today we'll be discussing the power of words. In the medical world, diseases and conditions have sometimes been given inappropriate or even offensive names. And the same goes for epilepsy. In fact, the word for epilepsy in many Asian languages translates to stigmatizing terms that neurologists across the region are trying to correct. With me today is Dr. Chong Tin Tan, who played an instrumental role in changing the word for epilepsy in Malay, the language spoken in Malaysia and a few other countries in Southeast Asia.
So, Dr. Tan, thank you again for taking time out of your day to meet with me. Do you mind introducing yourself to our audience before we begin?
[00:00:48] Dr. Chong Tin Tan: I'm C. T. Tan. I'm professor of neurology from the University of Malaya, which is in Kuala Lumpur, Malaysia. I was previously the chair of ILAE Asia-Oceania as well as the vice president of ILAE.
[00:01:11] Rachel Lea: Thank you so much. That's very impressive.
So, I am not familiar with the language of Malaysia. Can you tell our audience what was the original word for epilepsy in your country? And how did this word come about?
[00:01:28] Dr. Chong Tin Tan: You see, the original word in Malay is called “gila babi.” And “gila babi” means “mad pig.” And this is really, in a way, not surprising, because a lot of Southeast Asia is heavily influenced by the Chinese concept of medicine. And in the Chinese concept of medicine, epilepsy is associated with madness, as well as with animals.
So, for example, one common term being used in Chinese is called “yang dian.” “Yang dian” means “goat madness.” So, nearly all the terminology in Southeast Asia has this sort of connotation. It's a disease of madness; a disease of some animal. This is also true for Korea. Also true for Japan, as well as mainland China.
This is how the terminology came about, and it's not surprising.
[00:02:47] Rachel Lea: Yeah, when you put it that way, it's not really surprising. So, how did this term affect people with epilepsy in Malaysia and just the overall stigma at the time it was used?
[00:03:01] Dr. Chong Tin Tan: You see, most of the Malay people - they are Muslim. And for the Muslims, pig is a non halal animal. That means that it is unclean, religiously unclean. And, you know, of course, madness is a mental illness, which also carries a stigma. So when you call a person having a disease “mad pig,” you are stigmatizing them in two ways. In the spiritual sense, they are religiously unclean, as well as mentally mad. It is really quite stigmatizing.
[00:03:53] Rachel Lea: So, how did you and your team manage to change the term into something more medically based?
[00:04:02] Dr. Chong Tin Tan: All the countries in Southeast Asia - we are trying to catch up with the knowledge of science. So, there is a move to translate the medical terminology in the local languages. So, in Malaysia and in Indonesia, where the Malay language is commonly used, they often adopt the Western term and just change the spelling somewhat. For example, “inflammation” become “immflamasi.” You just change it to localize it. And so it was not a difficult task for us in a movement of adopting and changing the terminology.
We changed “gila babi,” or “mad pig,” to “epilepsi”: E-P-I-L-E-P-S-I. So, it was not difficult. Of course, we have to use it, you know, and that is also another part of our job.
[00:05:15] Rachel Lea: Let's go into that, actually. How did you go about introducing this word to the general public?
[00:05:21] Dr. Chong Tin Tan: Because at that time, there were not many neurologists in the country, which is true also in many of the developing countries. So if 20 or 30 of us decide to use this language and then don't use the word “pig madness” or “mad pig disease,” then slowly the public also follow.
And, you know, the medical textbook is all controlled by the professionals - by the academics. So, if we agree among ourselves, then things are much easier. And the government's language—the institutions that make dictionaries and so on—would also follow.
[00:06:17] Rachel Lea: That's incredible. So how did you agree on it? Since there's only 20 of you, how did you agree on this one word? Was it just because of the Western language, or was there any debate?
[00:06:30] Dr. Chong Tin Tan: It makes sense because we follow the language rule, and then there are not that many of us, and it makes sense to do it. So, there was no controversy whatsoever.
In a wider context, it is very difficult to create new languages, new terminology, and make it popular. So this one - we just tweak it a little bit. Then it works, you know, so it was quickly accepted.
[00:07:03] Rachel Lea: And how long would you say this took, for most people to start using this new word?
[00:07:10] Dr. Chong Tin Tan: I am not sure. We didn't track it, actually, but today the old term is hardly being heard of now.
[00:07:22] Rachel Lea: That's certainly a victory then.
So, in the years since the Malay word for epilepsy was changed, other countries have followed the example. In 2010, Hong Kong changed the word from the aforementioned “yang dian” or “goat madness” to “nao xian zheng”, which means “epilepsy”. In 2012, Korea changed from “gan-jil” or “mad sickness” to “noi-jeon-jeung”, which means “cerebroelectric disorder”.
With that being said, now that the word for epilepsy is being changed across the region, what are the next steps to reducing the stigma surrounding the condition, both in Malaysiaand in Asia as a whole?
[00:08:03] Dr. Chong Tin Tan: Well, the stigma issue is a very broad one. The main thing is some misunderstanding of the general public and people of importance, like the teachers and so on. So, it is also our task to go around and try to educate the public about the nature of epilepsy: how to cope with it, and how to manage it, how to live with it. So, it is a general education process. It's a long, continuous process.
As for the names of different countries, each country has to sort of evaluate for themselves. In some cultures, maybe they can get away without changing the names, but in our case, it makes sense for us to change it.
[00:09:10] Rachel Lea: So, is there anything you'd like to add before we end our discussion for today?
[00:09:16] Dr. Chong Tin Tan: I think our experience of discussing this particular issue shows us the importance of names, because names indicate our identity, and our identity reflects how other people look at us.
And it ultimately has to do with our self-esteem, and our self-esteem is not just how other people look at us. Our self-esteem is also how we look at ourselves, how we evaluate ourselves. So the evaluation of ourselves depends on other factors, such as competence—you know, whether we can determine our future or not.
So if we want to tackle the problem of stigma, it is not just about changing the attitude of the public, but it is also how to attend to our upbringing. Start to empower the children as they grow up, that our children with epilepsy will be very hardy people - you know, not too preoccupied with their sickness and so on. So I think we should look at not just stigma, but self-esteem or dignity of patients who have epilepsy.
[00:10:55] Rachel Lea: Well, thank you so much for meeting with me.
[00:10:58] Dr. Chong Tin Tan: Thank you.