What do disability rights tell us about the way we support and live with each other? Today's guest, Bhargavi Davar, has been answering this question as an activist, academic and community organiser, in India and beyond.
Bhargavi tells us how Buddhism, disability rights frameworks and her own experience as a survivor of mental health systems have shaped her life and work. She rejects the “toxic mental health system” and the colonial ideas of care at its core.
Our conversation explores her work with Bapu Trust in India, in the wider Asia-Pacific region with Transforming Communities for Inclusion (TCI) which has established inclusive models of care at the community level and made her a leading voice on disability rights globally.
This interview is in turns heart-rending, jaw-dropping, and mind-bending. Enjoy the highlights, or dig into the full conversation. And if you didn't see the last Debrief, catch-up on assistive technology and disability news from around the world.
Bhargavi's work with Bapu Trust is with poor urban communities in Pune, India, and guides the existing social fabric of these communities for inclusion. Her vision of inclusive communities is of finding a “mix of interconnectedness and individuality”.
She explains the principles of her work as being Buddhism on the one hand, and on the other, the international framework for rights of disabled people, the United Nations Convention on the Rights of Persons with Disabilities:
“The principle very deeply embedded in the core of Buddhism is that everything is interconnected, everything. There is no independent existence. For example, my phone, it came together through history and it's arrived at this form today.
And from the Convention we talk about bridging the gap, bringing people on an equal basis. There are so many principles there: intersectionality; the fact that structural factors determine people's lives; that you can't look at the individual as independent in that sense, but as someone who is impacted by a variety of social barriers or facilitators and attitudinal barriers or facilitators.”
This vision of inclusive communities is a rejection of mental health systems that are based on coercion and control. Putting these into context of other marginalized groups, and laws that deprived people affected by leprosy, the homeless, and denotified tribes:
“The so-called tradition of care within mental health, a large part of it is not medical, it is colonial. No other health system has the power to incarcerate people so absolutely.”
Bhargavi herself is a survivor of these systems and a person with psychosocial disability herself. Her mother was “incarcerated” in an institution and Bhargavi was left with a “deep, long enduring trauma”, after being exposed to things that “a child should never be exposed to.”
As well as the pain of these experiences, and being isolated by colleagues when she identified publicly in this way, Bhargavi talks about how she has been able to “resource this identity”, in part as an inspiration to find different solutions: “this identity is a treasure. It gives you the experience of what should not happen on this planet to persons with psychosocial disabilities.”
The search for a community-based approach comes out of her own personal search for “caring families, caring systems, caring support networks”. Through a system of “micro-actions”, their work in Pune interacts and supports with people on an individual basis. Sometimes it is giving someone a token of appreciation and asking how they are; sometimes helping get an identity card or a gas connection, in person-to-person community exchange.
I had some questions about this. We get into how communities can also be sources of violence, inaccessibility and discrimination. And Bhargavi herself contextualizes her work in Pune, and the settings it's expanding to: she asks what it's like in the huge mega-cities of Mumbai and Delhi. That is also at the heart of another question I have - how does a local approach apply more widely?
We call this a question of how to “scale” certain approaches. It's one of the needs colleagues and I have as professionals who are trying to find solutions that can work in many places. Much as we have a valid need, it's also one of the bad habits of bureaucrats to look for a cookie-cutter solution to whatever issue they're talking about. Bhargavi gives a powerful response to keep in mind the next time someone talks about “scale”:
“A program like ours might give us universal principles. Out of a set of 20 universal principles, 10 may apply in one country, another five may apply in some other country. But it's the local communities, the local organizations, organizations of persons with disabilities, which need to adapt and build their own idea of what is a community for them, and what means inclusive communities. If we give this out as a master narrative to be applied in Albania, Syria, Iraq, Tanzania, no, no, that will not work.
That's also the problem with scaling up mental health services. Mental health is such a nuanced person to person, community to community exchange. As we talk, we create our mental health status. As people come together, they create a mental health conclave, something that you contribute to and draw from.”
In this conversation, Bhargavi shows what it is to think through deeply the spirit and the practice of disability rights. How a vision of “inclusion” means changing the way we support each other and building new connections out of that. Do dig in to the full conversation, which starts off by getting to know Bhargavi's earthworms and how they guide her work.
About the newsletter
I'm Peter Torres Fremlin, and I make Disability Debrief to understand disability in a changing world. Disability Debrief is made with support from readers and from Sightsavers. This edition also has support from CBM Global.
“They have learned to survive in adverse conditions.”
Peter: In an interview someone asked, “What would you want to be in a different life?” And you said, "I'd like to be an earthworm because they work hard and they compost things." How is your work like an earthworm?
Bhargavi: Of all the things I've said, you picked on that one. Well, I have a garden on my terrace. I've always been a gardener, but I moved to Pune about 25 years ago and I set up my garden. I talk about my earthworms in the context of a legacy.
I brought a handful of earthworms when I started my garden. I created an ecosystem for them. In fact, the earthworms are the most cherished in my garden, not my plants or my vegetables or anything. They aren't very fast, the summers do not allow them to live long. However, year after year I see them thriving and coming back and doing the job that they do that is composting.
I never bought additional strain of earthworms. I don't have the red ones and the black ones and the new age ones. I have just my old earthworms. They have learned to survive in adverse conditions. Come rainfall then my garden just wakes up again to earthworm life. They’re the most hardworking creatures I ever saw in my life. Come what may. They're working, working, working. So they inspire me.
Peter: You identify as hardworking or they inspire you to…
Bhargavi: I'm like that myself. Come what may. My early life was extremely hard, I should say. And no child should be exposed to that level of hardship, that level of trauma. I'm 60 this year. Somewhere around 35, 36, I had, I should say, a revelation about not wasting my time, because we have such short life to live.
I was not looking for success or anything. If I work as hard as the earthworms possibly a legacy or a different vision might get left behind. I mean, I never thought of this like that until you asked, but definitely every day I wake up and go upstairs, you see these earthworms working and say, okay, hey, let me also work another day.
Peter: That's beautiful. My mother will be very happy to hear. She is very passionate about beetles and worms and these small lives in ecosystems.
Spirit of Buddhism and Disability Rights
Peter: When you talk about ecosystems, I think one thing that is very striking in your work is this insistence on the community response and on inclusive communities. What is this mission of an inclusive community?
Bhargavi: It’s easier for us to talk about inclusive communities in the global south, particularly in a city like Pune. I don't know how it is like in Mumbai and Delhi where there's so much alienation. I'm a practicing Buddhist and when I talk about inclusive communities it has a spirit of Buddhism for me. It also has a spirit of the Convention on the Rights of Persons with Disabilities, where there is a social fabric which provides the emotional safety net for persons with disabilities. This is what I read into the Convention. For me, it gives me hope.
We work with the urban poor, in the so-called slums of Pune. We call them human habitats or bastis. The social fabric is very much alive and active through a variety of, for example, self-help groups, support groups, mandir, places where people come together. People move in groups. I find that fascinating, because it's not the individualist framework that certain cultures favour.
I know that human rights is individualistic, but the Convention on Rights of Persons with Disabilities brought at least one new concept on human rights, and that is Article 19: that governments must enable inclusive communities to allow persons with disabilities to live in a place of their choice with all kinds of services available to them closer to home, and there be a number of support systems in place for them to live life independently.
It's interesting that the Convention says that you need support systems and services to live independently. The mix of interconnectedness as well as individuality. That, I believe, is the human society in its ideal form. I still keep hope that that ideal form can be implemented in different places.
Peter: Bhargavi, seriously, this is the first time I've heard a comparison between Buddhism and the CRPD. Can you say more about that?
Bhargavi: Well, you talk to a crazy person and you're likely to get all kinds of bizarre connections. Buddhism and the Convention are both pillars of my work. The principle very deeply embedded in the core of Buddhism is that everything is interconnected, everything. There is no independent existence. For example, my phone, it came together through history and it's arrived at this form today.
And from the Convention we talk about bridging the gap, bringing people on an equal basis. There are so many principles there: intersectionality; the fact that structural factors determine people's lives; that you can't look at the individual as independent in that sense, but as someone who is impacted by a variety of social barriers or facilitators and attitudinal barriers or facilitators. There's a whole bunch of economic and other facilitators and barriers, which really leads up to what a person is able to control in their lives.
How can each of us, or policy makers, or people in INGOs, people who are donors, people who are NGO actors, people who are in organizations of persons with disabilities… how can we contribute to this flux of determinants that influence people's lives and their feeling of independence and being able to control their lives, so that the barriers are removed and the facilitators are enhanced?
Community, and mental health's colonial filter
Peter: Let's explore your vision of inclusive communities. Two things occur to me. One is that you're looking for a solution in the community rather than sending someone to an institution or something else that takes them outside. And second is that “community” sounds nice, but it is the place of a lot of violence and discrimination, exclusion, inaccessibility, mastans, the whole thing.
Bhargavi: Absolutely. I was also part of the women's movement for many years. We talked a lot about patriarchy creating this construct of mental illness within families as a way of excluding women from access to resources, including their own self resources. I have written quite a lot on this topic over the years, so I'm fully aware that community is a can of worms…
Peter: … back to the worms. [laughs]
Bhargavi: [laughs] They're not nice worms, I have to say. They're not mine at home. They're somewhat scary creatures.
I certainly do not romanticize or glorify community or family. Absolutely not. But I think the cycle of thought has moved from thesis to antithesis to synthesis in my head in a very Hegelian way. Because I said, okay, now what are the solutions?
The so-called tradition of care within mental health, a large part of it is not medical, it is colonial. No other health system has the power to incarcerate people so absolutely. And that part is very post-colonial, and very Commonwealth. It exists in India, in Singapore, Malaysia, South Africa, and possibly Australia, UK.
But the thing is that in India, and indeed in any colonized country, when you look at the mental health system, you see people are getting dragged into institutions, or they're getting sedated against their will, serious violation of their bodily and mental integrity. You're not thinking colonialism. You're thinking, hey, that's how people should be treated who are crazy.
If it was a domestic violence context, you would see this and say, hey, that is gender based violence. Somebody's catching hold of you, beating you up and yelling at you, and that's happening in the household. And this is the husband doing this to the wife. This is violence.
It's so frontal, the violence in the mental health system, yet we look at it and say, hey, these are good doctors serving a society by putting some people away. We don't name that as violence. You see? So for me, this has been a really a huge paradox. What filter are we wearing? That filter is the colonial filter.
Deprivation of liberty, not care
Peter: If I'm understanding what you're saying, then colonial structures of control of certain groups are things we still associate with ways of care of those groups?
Bhargavi: They were never meant to be care. In India, post-colonial British Commonwealth, there were several people who were subject to denial of constitutional right to freedom. You have people who are considered as vagrants and paupers, mendicants, fakirs, who are wandering about, the homeless, the insolvent. These were put away in one set of institutions.
We still have that law today in India, and in several other countries. It's called the Beggary Act. Then we have the so-called “lepers”, people affected by leprosy. Fortunately, they repealed the Leprosy Act in India, but the ‘leper colonies’ have remained. There is still a huge taboo about these people wandering about on the roads. Third was the so-called “Criminal Tribes”. Now they have become “Denotified Tribes”, and they have earned some merit before the government and policy.
But some of these old laws have remained. These were never meant to be care laws. They were deprivation of liberty laws, giving the right and the power to the state authorities to incarcerate people against their will. In these laws you have, for example, arrest without warrant. An alleged criminal would have rights read to them in modern day India. But people who come under the Mental Health Law or under the Beggary Law would not have such a right, so they can be picked up and pulled into an institution.
There is no medical part in this. I keep asking. At some point, for me, it is like a very big joke. And at another point, it is filled with pathos that you ask a doctor, “You're putting somebody away by sedating them against their will, or literally physically holding them inside a cell. What are you treating here?” You don't get an answer to that, because it is not medical, coercion is colonial.
Peter: People might say that some are, quote unquote, “not able to stay at home”, or “not able to stay in that community” so you need to send to a place where they can be, “looked after.”
Bhargavi: But they're not looked after, they’re put away. The number of violations against people inside institutions are horrendous, whether in India or anywhere in the world. Again, it’s a very colonial intent that people are put away so that the genteels… It's the middle class in India who call up the police and say, “There is a person without clothes wandering in my locality. Can you pick him up and put him away?” They don't want to see this.
Peter: When we look at colonial patterns, it's also important to look at how they reproduce in a post-colonial way. The British were in India for 200 years and then there’s more than 70 years of independence politically.
Bhargavi: Yeah. I just want to clarify that I'm not blaming the British for this. There's someone who wrote about colonialism and how colonialism is on the streets much after the colonizers. Because it's advantageous. Today, people who reap the benefits of these colonial structures are husbands who want to very quickly divorce their wives, brothers or sisters who want to appropriate the inheritance of their siblings, people who want to grab their parents' property before it is handed over to them through inheritance.
Peter: They might be saying this person is, quote unquote, “insane”. So we can grab their stuff.
Bhargavi: Absolutely. People who are using these institutions and these laws against people of unsound mind are people who definitely have an eye on profit-making and vested interests with respect to, say, custody of children. It's a post-independence phenomenon. These laws remain, allowing vested interest to benefit and profit in one way or the other.
I say in fun that the people diagnosed with a mental illness are the only ones in this country who pay to get arrested. If you were a diabetic, even if my sugar was 500, 600, the doctor would not just call me and take me into a diabetes hospital against my will. I might get rage from my family members, I might be deprived of certain samosas and carbohydrates, but people would not do that to me.
We called the Mental Healthcare Act [India, 2017] the “emperor’s new clothes”, because no saying what can count as mental illness. There is no bug, when there is no urine analysis, x-ray, CT scan, MRI, hair analysis, whatever. You don't have a physiology for this construct. How can I believe a doctor who cannot show me a pathology test and say, hey, this is what I found in your blood or in your brain, whatever? And yet worldwide this discipline flourishes as a medical discipline.
This is not to say, Peter, that there are no mental health issues. Any of us who have lost a loved one and have pangs of deep depression over the weeks following... Any of us who have gone through serious financial losses, who faced childhood trauma, there is an experience of psychosocial distress, even disturbance or disability. Right? But for that we need another kind of language. That has been my intent in my work, and hence my also search for new solutions and a new sense of community.
They say it's about care. Really, we have to deal with the penal system in mental health. In order to deal with that you have to get into the police system, the legal system, deal with courts, deal with lawyers, deal with different kinds of doctors, all of that. So it's a normative system, the mental health world. The minute I'm diagnosed with a mental illness by a so-called competent authority it leads me to be a subject of the law. I'm alleged to be a mentally ill person upon whom things can be done by others.
Whereas if I'm a person with psychosocial distress, disturbance or disability in the community who is violated by family members or community members, that legal order is not over there, it's not over there. I can negotiate. I can confront. I can seek community justice. I can placate. I can contribute. I can negotiate. You see?
Solutions from the community, not the State
Peter: There's agency at the community level.
Bhargavi: Yes. And I'm not contesting the State [at the community level]. I'm just contesting my family members. I can establish a communication with them, if possible. We don’t want the State to come too close to communities, because when they do, they will offer you institutions. Let us see how we can exhaust the resources of the communities.
We use the language of, let's say, a water reservoir, an energy reservoir, renewable energy reservoir. Communities are like that. We still see it in many parts of India, rural India. You must have seen it in Bangladesh. It's possible to retrieve that sense of human emotions as a reservoir. And if you have somebody you care for, then you resource from that reservoir. Can you see?
Peter: I used to make the argument in Bangladesh, oh look, you have “hard” accessibility – of physical infrastructure – which is very much not there, and you have “soft” accessibility – the amount that people are prepared to help. But when I shared this opinion with friends in the disability movement they often said to me, “We cannot rely on that. We need a law to protect our rights. We need to change the infrastructure so that we are not relying on a person to help us.”
Bhargavi: Yeah. I mean, I was only talking about the toxic mental health system. Of course we need a disability rights law, which we have in this country. It's a fairly decent one. Except that, again, because of the medical perspective about us, it puts us in the limited guardianship hole, which takes away many of our rights.
I was part of the disability law drafting committee many years ago. So absolutely. I mean, we need an all-inclusive disability legislation. And we also need to be included in all other laws which promise equality, non-discrimination, employment, labor laws. We need to be everywhere.
Trauma and identifying as a survivor of these systems
Peter: Bhargavi, tell me, as much as you'd like to talk about it, your own experience as a survivor of mental health systems. I think it was the confinement of your mother and your own experience, of psychosocial disability. How do they interrelate with your work? There must be also quite a lot of cost to you to be sharing these things. People may believe you, maybe they don't, maybe they're rude to you.
Bhargavi: I have to say that it has made me more spiritual. It has brought me patience to be able to tolerate humiliation, to be laughed at, to be ridiculed, to be completely ignored. I have a huge thing about my abandonment as a child because my mother was in the institution. I was exposed to all kinds of bizarre things that children should never be exposed to. It left a deep, long enduring trauma, and did not allow me to find friendships or relationships in the way that others might seek.
I didn't talk a lot about this until very recently. I got exposed to my identity when I was with Tina Minkowitz. She took an interview of me before allowing me to join the World Network Of Users And Survivors Of Psychiatry as a board member. She said, “Are you a person who is a user or survivor?” I thought, what is that? I had read a lot of anti-psychiatry literature before. I had even written a book. My first book was on anti-psychiatry, probably the only book written at that time on anti psychiatry in India.
[Talking with Tina] was the first time I really encountered my identity as a survivor. Again, it was quite shattering for me because I had to give up on my so-called academic credentials at that point. It doesn't upgrade me, it brings me down by several notches. I found that people in my office were looking at me differently. My board was treating me differently. My circles were like, okay, now what is this new thing? It was not easy.
Peter: Did that change with time, or did they then adjust?
Bhargavi: I've lived with this identity now for about 25 years. At this point I don't care. I have known, Peter, how to resource this identity. Because this identity is a treasure. It gives you the experience of what should not happen on this planet to persons with psychosocial disabilities.
Earlier I was afraid to explore this too much. I was too much into rationalizing, finding big jargon words to explain what I was going through. But now I can be pretty raw in saying “This is not right. No, you don't do it like this. We do it another way.” That's how inclusion, inclusive communities became a big thing in my life.
That was my search, I believe, when I was young. My mother was incarcerated. I was looking for caring families, caring systems, caring support networks. Our design in Pune is a lot about social building, social capital, developing communication patterns in families and households and neighborhoods. Making mental health and support an everyday conversation among people.
An inclusive approach during the pandemic lockdown
To give an example, I think during Corona a lot of people in our low income communities in Pune were really hopeless. We got the government license to be an essential service at this point. They must have gone up to thousands of people on a monthly basis just talking about how they can coping this time. They would find boards on which we could write messages of hope.
And later on, once the lockdown got lifted, we got a lot of positive feedback from the community saying that, "You kept us alive during this time. It helped us know that there was somebody there who cared about us to come and ask, 'How are you doing today?' And to offer us a flower."
Such gestures in the community, first of all, in that program is a big one on preventing institutionalization, building social support systems, human capital, social capital, bringing people together so that they can support somebody with a high support need. Neighbors gather together when the family lets the person down by cutting food and fluid, by being violent, not giving a place to rest, no caring, communication, so on and so forth. So we build a lot of micro actions, really create examples.
Ours is a population based project. This is not something that is unique. People say, “You guys are doing something unique, philosophical, spiritual." But we scaled it. We scaled it not only in our city, but we've scaled it to Chhattisgarh and to Madhya Pradesh. People love it.
The vision of inclusion and how as human beings we can be inclusive is a fascinating topic. It's an aspiration for a lot of us who don't know how to do it. I always say that we are Machiavellian at heart. Can we look at the gentler parts of ourselves and convert that into a reservoir of care? Practice of care, training for care, these are things that we really do. There is a full program on this. We have measurements, indicators, trainings, all of that.
How local approaches apply to different contexts
Peter: When you see the situations in different countries, do you feel like these models of inclusion can also apply?
Bhargavi: A program like ours might give us universal principles. Out of a set of 20 universal principles, 10 may apply in one country, another five may apply in some other country. But it's the local communities, the local organizations, organizations of persons with disabilities, which need to adapt and build their own idea of what is a community for them, and what means inclusive communities. If we give this out as a master narrative to be applied in Albania, Syria, Iraq, Tanzania, no, no, that will not work.
That's also the problem with scaling up mental health services. Mental health is such a nuanced person to person, community to community exchange. As we talk, we create our mental health status. As people come together, they create a mental health conclave, something that you contribute to and draw from.
In this way, for the work we do in Pune, we have a vast inventory of micro-actions. There is no limit to those micro actions which can help. For someone, it may be getting a gas connection. For another person, it may be recognition as an indigenous person and getting that identity card. It depends on a person's needs. A wide choice is necessary to all that.
Peter: You’re picking from things that might normally be on different lists: mental health services, social services, community interaction. The list of people who give you a flower and listens to how you are. It’s a wide range of types of intervention.
Bhargavi: Yes. And that's the problem with medical services, because they have one formula, one algorithm, or a solution for everything.
Inclusion, control, and letting go
Peter: It would be good to hear how you navigate the difference between inclusion and, quote unquote, “inclusion”? Lots of people are saying the popular words. What are the questions you ask yourself to help understand if this is a genuinely community based response, or if actually they’re just replicating segregation, recreating an institution at different level?
Bhargavi: Once again, Buddhism and CRPD mix helps me sort this out at the personal level. Another of the core principles of Buddhism is the idea of impermanence, that everything shifts and changes. There is nothing which exists forever, including of course me. We are taught to practice this every day in one way or the other. For example, when you light a candle imagine that that candle is used slowly burning away. There are many ways we practice impermanence, and it builds humility in us. More importantly, it allows us to let go.
In terms of the CRPD, for me, supported decision making is something like that. You engage, yet you disengage. You help to support, and yet you step back when you're not needed. Some of us who are in caring profession, and I've faced this a lot in the Bapu Trust, we know that someone we are working with is highly dependent on us, and we don't know when to stop helping.
We have a circle of care metaphor. It's a tool, it's a practice, all of that. We say, okay, let's go to the last spot in the circle of care. We're not needed. Let's recognize that. Let's let go. Letting go is a really core principle.
I link that up with the deinstitutionalization work that we are doing with the United Nations CRPD committee, the process of building guidance on deinstitutionalization. For me, it's not the physical infrastructure. It's the attitudinal infrastructure. Can we let go of people?
How far do we want to go to keep controlling them? Control means exclusion, and letting go means inclusion. For me, this is a very simple baseline indicator. In Bapu Trust we have an inventory of indicators on the institutional mentality, and how to prevent that mentality from taking over.
Peter: Like when the bird pushes the baby bird out of the nest so it learns to fly, but you have to do it at the right time. Is that a good metaphor?
Bhargavi: Absolutely. The CRPD says “evolving capacity”. There are very many other clauses which are about supported decision making. Making reasonable accommodation is a big one. The example I always give is in my earliest exposure to disability advocacy. I was in a big conference hall, everybody left for lunch and there was a blind man on the stage. He had just finished speaking. He was walking very confidently. He had his cane and he was walking. I was afraid that he was going to fall, because there were no stairs to that stage.
He gave me the best learning I ever had in my life on reasonable accommodation and how to offer support. I thought, okay, a blind person, you catch them by the elbow and take them downstairs. That was my very lay idea. Even though I had learned about reasonable accommodation, I didn't know how to practice it. I didn't know how much was too much support and how much was absolutely no support and what was the boundary. What I learned then is ask.
I went up to him and said, “Do you want support?” He asked me, “Where do we have to go?” I said, “We have to go downstairs for lunch.” “So there must be a stairway.” I said, “Yeah, there's a stairway.” I said “I was worried because there are no steps to this stage and you might have to just jump and then walk up to the stairs.”
He said, “Take me. Let me catch you by your elbow. I want to hold you by your left elbow, and then I'm going to go down. And then when you reach the end of the stage first you jump down. Let me see how steep you jump down. And then I will jump after you putting my hand on your shoulder. After that, I'm going to hold you by your elbow. You take me up to the stairs, put my left hand on the railing by the side of the stairs. Let me be. You go up to the end of the stairs. I will follow you perhaps. At the end of the stairs, then I will again take your elbow. And then you can walk me to the dining hall.”
People ask us in a strange way how do we support a person with psychosocial disability? But let's learn how to support a blind person. Let's learn how to support someone in a wheelchair. It’s not that different.
Peter: These are the micro-actions that you are talking about.
Bhargavi: Support actions.
Peter: The respect and inclusion is happening on how did you ask. Not just did you help someone up the stairs, but did you offer your elbow like they wanted you to? Or did you do something that they didn't want, that violated their wishes and comfort and meant they didn't feel safe or in control?
Bhargavi: That's about Article 17 [in the CRPD], the right to bodily and mental integrity. To catch hold of a wheelchair because you think that person needs help and just wheel it along, that's a violation of Article 17. It can get abusive. You can get into Article 15 of violence and abuse. Very often that happens.
Peter: Wow. Bhargavi, this is a really mind blowing conversation in lots of ways. You also mentioned Hegel, we didn't get a chance to get into that, but maybe that's fortunate.
Recognising psychosocial disability
Peter: It would be great to hear any closing reflections you have for readers of the Debrief, from your side or from the earthworm side as well.
Bhargavi: Thank you. I really like that respect for my earthworms. That's very endearing of you to bring them up and keep them in mind through this conversation. I feel cherished because that's really a very deep connection I have over there with soil, nature, earthworms, all of that.
What message? Very often people look at us, people with psychosocial disabilities, and say, “Tell me where is the disability?” That's very insensitive. People have deeply buried trauma, sometimes it can be lifelong. I have lived with trauma for about 40 years. I've recently found the language to talk about it, to identify when it is coming up, and how to deal with it.
I've tried a million things, starting with going to the gym and gardening and meditations. I continue to do all of that to just ensure that my body is not erupting in trauma every day. But my body erupting in trauma is a very personal experience for me. People who might be seeing me will not see things flowing out of my skin or boils popping out, or rashes. I can remain frozen for hours when these things happen. I can go into freeze mode.
Be compassionate for people like me who say that they have a psychosocial disability. I've lived, I don't know, 40 years dealing with this. It's an enduring piece of history for me. I did not develop a personal life. I live like a fakir. I just want to deal with my body on a day to day basis so that this it doesn't erupt in trauma day after day. That's the sole purpose for which I live. And in the time that I get, I do some other stuff in build Bapu Trust and build TCI and all of that [laughs].
I would really like people to see us as persons with disabilities. This is my humble request to the disability community, and to all the INGOs: not put us in the medical block. We hate that. Please don't see us as patients, as consumers of the service. Don't. We need social connection, not isolation.
Peter: Being seen as people with disabilities means from that rights point of view.
Bhargavi: People with psychosocial disabilities. People who need inclusion, not segregation. People who need choice, not just a single narrative of medication. We need our work and employment. We need right to family. We need leisure. We need all kinds of things that other persons with disabilities need.
When I was doing background I particularly appreciated her interview on a Value System for Inclusive Educational Spaces and her page as an Ashoka Fellow that describes much of her background and intentions. In this 2016 interview with Feminism India, Bhargavi explores the relationship between mental health and gender.
For more in-depth interviews with people changing the world, see the conversation I had with Abner Manlapaz in the Philippines.
Many thanks to Bhargavi for sharing so much in this interview, and introducing us to her worms. Thanks to Kirsty Thompson and Mary Keogh for suggesting Bhargavi as a guest.