Firstpost Podcast: How social stigma affects access to healthcare for vulnerable groups; an expert explains

When it comes to dealing with communicable diseases like the novel coronavirus, issues of stigma and discrimination often come to the forefront. This problem is more serious in the case of COVID-19, as it has had a deep impact on the everyday lives of people across the world.

In India, many incidents of social shaming related to the disease have emerged in recent times. Terms like 'social' distancing instead of 'physical' distancing serve to reinforce regressive caste practices. In such a scenario, how do we facilitate the vulnerable to smoothly access healthcare?

To break this down, Dr. Aiswarya speaks to Magdalene Jeyarathnam, the founder of East West Centre for Counselling and Training as well as Indian Institute of Psychodrama Therapy. Both of them draw on their professional experience with fighting tuberculosis and HIV to reinforce how addressing disease-related stigma is crucial to containing any pandemic. You can listen to the full episode here. Here is the full transcript of the interview:

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Today is Day 5 of the complete lockdown, which is a measure taken for the suppression and containment of the Coronavirus outbreak in India. The days are filled with anxiety for all of us staying at home without any infection. But can we imagine the mind-set of people who are spending their time in quarantine in their home or state-run facilities either because of their travel history or because they were in contact with someone who was COVID 19 positive. I am Dr. Aiswarya Rao, a Paediatrician and Public Health Consultant and today I am going to talk to my colleague Magdalene Jeyarathnam, who is the founder of East West Centre for Counselling and Training, and for the Indian Institute of Psychodrama, where she uses expressive arts and therapy for dealing with emotional and psychological well-being.

Follow LIVE updates on the coronavirus outbreak here

A: Hi Magdalene! Thank you for agreeing to talk to me for my Podcast
So, I was just telling our viewers that you and I go a long way back in our work together in fighting another virus that is the HIV virus. I was thinking I can pick on your expertise today, see if there are some lessons in that we can use in our present effort to contain this COVID infection.

 Firstpost Podcast: How social stigma affects access to healthcare for vulnerable groups; an expert explains

Representational image. PTI

Today I just wanted to talk to you and discuss with you, one thing about Stigma & Discrimination that people in quarantine are facing.

What do you think about the emotional impact of those who are in quarantine, due to stigma from neighbours?

M: I think coming from the east and coming from this part of the world, one of the things that we immediately relate to when ostracised for whatever reason – I mean it can be with the best of interests. But the moment you say, it cannot be with the rest of us, you have to be separate; I think it sets us off on a journey of shame. Maybe I have done something wrong. Maybe I shouldn’t have done that. I think on an emotional level, it gives us shame and guilt. These are the places its ends us to. So while the rest of the world needs to be protected, I think the way we deal with people who, may have it – not that they have it.

A: I know, they are just only in quarantine..

M: Exactly! It’s like as if we have given a sentence before even finding out. No trial, but sentence is given, you know. This is the way we are jumping to many things in life, in this part of the world. I think it is very important for us to - because that person could be me. This virus is not going to look for, you know, whether this family I should go to, or that family I should go to. Not that. You are under a risk, somebody known in your circle, or unknown people, for whatever reason, they have got it. And then if you asked to be quarantined, it really doesn’t have to be where we are ashamed of ourselves. And the rest of us should not put them in the place of shame as well. You know that is important. Because when a person feels ashamed, they don’t want to share any more information. They are closed.

A: They are not going to come forward, and other people on the street are not going to come forward for testing anymore.

M: Because they think this person is punished. We go a long way back. When we say, you get out of a classroom to a child, it is a shame for the child. I am going to be punished. The punishment for something I have done. So now when a person comes like that, one is the person who is coming from a place with a high risk, and they feel they are perhaps carrying it for them to feel shame and they are not going to be forth coming with any information relating to themselves further, different people that they have come into contact with, to different places that they have gone to, who else could have been infected. Now they are going to be very ashamed of it.

Not only that person, this person is feeling a sense of shame and not going to be forth coming or giving information. What about those of us who are looking at it? There is say, a sticker on your wall, that this building we have quarantined, we are quarantining these people. What happens is that, for me if you are looking at it “Oh my God! If I say that I know this person, and yesterday I met this person for tea and all, went for lunch with this person, they will do the same to me. They will put a sticker in my house. So, I will not give any information about me.

A: So these stickers are actually a little bit counterproductive. Because you don’t want to be in that position anymore.

M: While we understand that, it is very easy for the transmission to take place, and to give to other people in all countries as well in our own country. Its very easy we know this. But at the same time, I think that protecting and safeguarding individual people who may have it, I think will help us in the long way in enabling the people to come forward.

A: That a very important point about not stigmatising, by putting these big labels, and we heard that they are putting individual stamps on individual people, marking them, that I mean. What do you think will be the emotional state of someone who is marked? You are in quarantine.

M: It goes back to the same thing of branding no? Like in a place where many years before, how you know how branding was done on slaves, branding was done on people who you own, and branding is done on animals. You have objectified the person. And I think that is not helpful at all. And think that for those of who are giving information, like the other day I saw a WhatsApp message. A photograph is from one of the Corporation officials’ book where they have written the name of the person who is quarantine, their phone number, the age of the person, and in which area. It is written on that and pages of this has come to be circulated

A: That is absolutely a breach of patient privilege and confidentiality.

M: We shouldn’t do this. I think we should be responsible enough. So when we see a message like this to first of all to tell the person who sent it, You know what, you are sending personal information of somebody. It is without their consent. You are giving information about a child, the age of the child, the phone number of the child, that this child’s father or mother has the infection is being circulated on a WhatsApp medium.

A: I think this is not a best practice

But official information that is shared by the Government on their Twitter handle and their press releases has always maintained confidentiality. They have not divulged information. They have only said you know 46 year old male, living in Purasawalkam or something like that. But I think that somewhere this leak has happened, from what you are telling. So that is quite scary.

M: Yes Aish! Government sending the information saying that. You know reporting, you and I have done this sort of reporting. Cuddalore district. In this particular area, this many people came for testing, and this many got infected, and of this.

A: This is the demography of the persons tested positive.

M: And they have given this information is different from saying Mr. So and So is 49 years old and

A: He is living in Purasawalkam and

M: Imagine that. This is the kind of information I am saying. I think it is very important that we be a little more sensitive. Very sensitive. Treat everybody because, we want more and more people to self-quarantine. We treat them well and we respect them for doing so. Rather than stigmatise and discriminate against them. Then people will pride in saying, listen I came from this place, and I just travelled, I have a recent history of travel and I made be at a risk and I going to self-isolate, I am going to self-quarantine. So people will come forward. They feel proud because they are doing something in a responsible manner.

A: I think that will only foster this culture of self-disclosure. And not punish someone for disclosing that they have travelled or if that they have contact history. But to make it a very enabling thing. That’s a very important point and I hope that the Health Officials are listening. And also communication. So far we have Government and public interest persons like film stars and celebrities coming and telling us what we should do. Wash your hands, make this physical distance from anybody, how you would handle object etc. But something on stigma and discrimination is yet not communicated. And that information needs to be out there, because we are in the 3rd day of lock down and I think that now is the time to talk about this stigma. Don’t you think?

M: This thing started with the HIV program. TB also.

A: It’s a stigmatising disease.

M: I remember as a child watching Doordarshan and the advertisements that they put on the TV those days. This skeleton.

A: Scary images.

M: And we found out over a period of time when you make something fearful, it creates anxiety and fear among the public. The message doesn’t reach. You have to give factual information and make it as if it is not some monster, but bring it in a very different manner. This is the situation here. So, instead of frightening most of the public saying, you can get it. Yes, we can get it. But also bring the fact that out of this many people only this many people were infected. Only this many people died. But, also bring into focus that ..

A: Anyone can get infected, it could be you…that sort of a thing. Not to other the person.

M: In South Korea, this one woman, one women who got infected,

A: Patient No:31

M: When they traced back they found out that she was responsible for 60% of infections, 5000 people were infected form her. It was directly connected to her. So I am saying, that person could be you. Therefore, we take the responsibility. Each of us, to make sure that this is our social responsibility. That we don’t infect other people and we self-quarantine. Giving pride to people that when you do this for yourself, you are really safeguarding.

A: Make it like a matter of pride that you have volunteered the history, and that you have volunteered to go into self-quarantine. That will work.

M: That will work. This is what I am saying. That so many people have stepped forward to say that they want to go on a self-quarantine. I think that will create a better image than saying 14000 people houses have been..

A: Sealed and stamped and that sort of labelling..

M: So you should be worried about that. So I think it’s an upbringing, that here we are going to show how patriotic we are.

A: In the interests of the nation, and of our neighbours and our community we have stepped forward to go into self-quarantine, kind of a thing.

M: Imagine news reports said like this Aish, where a report is being read, that in Mylapore area, 50 people have come forward to say that they maybe at a risk and they are going on self-quarantine. And these people need to be congratulated. Can you imagine, how it will change the ..

A: It will give a different spin on the narrative itself.

M: When we do that it make everybody take action, and you know I think the thing about clapping. What I thought was the reason may people sort took it on, that is whether they fully understood it or not, why they took it on is because they, it was a positive thing.

A: A very positive activity for everyone

M: This generated so much of energy. So this is what we need to do.

A: I think we need to look quarantine also, the stigma will, go then only more people will identify themselves and it is all our interests to take the stigma out.

There was another story on FB that was shared and I don’t know if you heard about it. About a young nurse from North east. She looks like someone, like a Chinese person. She had been on duty for 14 hours, with a COVID positive person, she just stepped outside, you know she was this full armour and all, and she hadn’t eaten at all and so she stepped outside to get something to eat in a local shop after a 14 hour duty. And a kid who was also there at the shop looked at her and looked at her face and said “Corona Virus” and he pointed his finger at her and he ran away screaming. I mean, she wrote about in FB herself and shared multiple times. But she didn’t blame the child, but understand where the child came from, but what is this culture of kids being taught to point fingers at someone and what is this…is this a very Indian thing?? Are we? What’s going wrong here?

M: Its Indian to the extent, that parents or information that the child has got is frightening images. So the child is having a monster in mind. You know. The virus is itself a monster in a way, in a sense. So for him he is projecting that fear and that anxiety on somebody else. This is the reason I am saying campaign. What we do cannot be a campaign that you frighten then with. We have to have campaigns that are factual. (16:41) The child must be given information in a positive way. When we are focusing on if people do this. If you are in a crowded place and come away from a crowded place and you think that you may be carrying the virus, what are somethings that you can do. What can you expect? You may be getting it. Doesn’t mean you are going to die. Perhaps you will have fever, and something in a couple of weeks. And in all probability you are going to be fine. But if you are finding difficulty in this leading up to the 2 weeks, in situations like that’s when you go and seek help. So, if you are not telling O this virus is coming, this virus is coming. This person is already creating images and is creating some monster in their own head. Each one’s monster will be very different.

A: Depending on their imagination.

M: Particularly as children. There are actually lot of materials that are available from Italy, Spain and all on how to explain about the virus to children.

A: Even the Indian MOHFW they have a little booklet on talking to children on Coronavirus.

M: Actually we don’t even need to teach corona…any virus for that matter. This is general hygiene that they are talking about. How when you feel like coughing or sneezing what should we do. How do we protect our self. I think some basic information like this. Instead of frightening people like.
A: And like we talked before, factual information given with great transparency and good communication will address all these problems. It will take away the stigma. That what we call it magical thinking, don’t we? When there is absence of information, then we imagine the worst for it.

M: Ya. Which is what happens? Human brain, likes to fill in the gaps. So if you are giving some information, but you have not given all the information, automatically your brain will fill in the gaps with something.

A: Moving on, I just want to talk about…we have talked about stigma, but we have enough evidence to link stigma with poverty, and in other countries with race, and we also how people from the North East are unfortunately identified with Chinese and therefore stigmatised, and also caste. We saw stories about how migrant workers who are in search of livelihood and moving, so they can be targets. So when migrant workers are returning back home or anything they are seen as people bringing the disease into their areas. SO there is this link of this stigma not to the rich, but to the poor and the most vulnerable among us. So, how do you think we should go about addressing this? What are some kind ways to address this kind of stigma and linking it to the poorest of us.

M: I think this is a very important point that you are bringing up Aish. You know we are coming from a 500-year-old history of caste and putting down vulnerable people in many ways. So I feel it is built in us generation by generation, we carry in our psyche. When we see the poorest of the poor, when we see people who cannot fend for themselves, we target and we project our anger and fear something onto them. This is the mould on which we are already growing up , and so we react like that. It is very important to be aware that I am a person who can do this. It is good to remember that each of us has the potential to do this. To point fingers at who does not have power to be like you. We are coming from the privilege of saying – you are responsible. Because our mind wants to find something or someone else who is responsible.

A: And in this same context, we have seen voices taking pride in their caste privilege being amplified. See, people are going about saying, Oh, we always been doing this social distancing. We told you so. Thereby you know justifying their practices of discrimination. Are you seeing this? Is this upsetting you at all?

M: I know what you are saying. Specific castes and communities are saying you know, you should not touch a certain caste. You should keep the money on the floor and they will come and take the money and you don’t touch what they are touching unless you sprinkle some water on it. This is not what we are talking about. The virus is not going to go away and your health. You cannot compare those rituals and those customs, to what we are talking about in terms of infection and some contagion. It’s a very different thing. There is no point in saying we have been practicing this for years. While I agree we are people who when we meet each other we are not naturally to hug or to handshake. Physical contact, therefore, we fold our hands. That way, that ritual everyone does irrespective of which caste you are belonging. To some extent protects us. Ok infect to get transmitted. But if you are saying we practice this social distancing when this vegetables seller comes, this person who is selling salt on this street is coming to my street and I want to buy salt and I keep him standing at a particular place and after they go I will sprinkle some water. This is not helping in terms of not carrying an infection you know. This is a different matter altogether. This is putting down a community. It is to say that I am coming from a better caste and a better class. So we are not talking about that. Because that doesn’t help you. We really need to look at how infections are stopped.

A: I think there will be a spill over from this lock down experience and this social distancing. I don’t want to use the word social distancing, I have been purposefully using the world ‘Physical distancing’ and WHO also said physical distancing is a better word. It is less discriminating, It is less stigmatising. But in the days to come we will see how we will reduce our anxiety when we look at people who are going into quarantine. Or when we look at people who said they were positive for the COVID infection. So thank you for talking to me Magdalene. So much to learn from you and we will come back again to you and I am going to pick on you again to talk to us in the days to come.

M: Thank you so much for inviting Aiswarya.
A: See ya.

That was Magdalene Jeyarathnam, in conversation with me. In conclusion it is safe for us to say that stigma and discrimination associated with the Coronavirus infection can no doubt be reduced through clear communication. We need to urge our governments to work on more detailed and informed communication strategies, to safeguard the interests of people who are in quarantine and of those who are suspected of being in contact. Only then will people come forward for testing and for accessing services. This is a critical component of supressing the onslaught of the march of the Coronavirus infection in India.

This is Dr. Aiswarya Rao signing off and I will see you in the next podcast with more information. Thanks for listening.

Updated Date: Mar 30, 2020 23:50:09 IST



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