S01E08: Building Webs Of Care

Deepika: Today, we’re going to continue our conversation on connection and care and what that means while we’re living in the time of a global pandemic.

And for this conversation, I’m happy to introduce one of the co-founders of the Curio-City Collective, Srinidhi Raghavan. She’ll be talking about her own experience of care and learning to receive care, and the possibilities and potential it holds for all of us as we inhabit our communities.

Srinidhi: When we began talking about care and connection in the times of COVID19, I began to think about my own relationship with care giving and care receiving. It has evolved so much over the years. I have grown to see how revolutionary care really is. This quote by Johanna Hedva, an activist and the person who wrote sick woman theory, speaks to this:

What we’re watching happen with COVID-19 is what happens when care insists on itself, when the care of others becomes mandatory, when it takes up space and money and labor and energy. See how hard it is to do? The world isn’t built to give care freely and abundantly. It’s trying now, but look how alien a concept this is, how hard it is to make happen. It will take all of us…it will take all of us operating on the principle that if only some of us are well, none of us are. And thats exactly why its revolutionary. Because care demands that we live as though we are all interconnected – which we are – it invalidates the myth of the individual’s autonomy. In care, we know our limits because they are the places where we meet each other. My limit is where you meet me, yours is where I find you, and, at this meeting place, we are linked, made of the same stuff, transforming into one because of the other.

Srinidhi: In our minds, an ill person, a disabled person, a disabling condition all have caveats and imagery attached. I somehow didn’t fit any of these despite the fact that I have lived with chronic pain for five years now. Calling attention to the fact that I am in pain and need some help is one of the hardest things I have to do. Especially in the face of everybody’s shock, disbelief and the oh so common “you don’t look sick”. So very early on, I got good at pretending I was fine and by making myself more invisible. This meant I struggled to tell people at work, at home, friends, acquaintances, everybody how ill I was. I didn’t go out much and often had to cancel plans last minute cause my body couldn’t be bothered to match my calendar. If the migraine would come, it would come. If the pain would peak, it would peak. This resulted in me living a very isolated life. Eventually all my non-disabled friends were confused by the number of events I had to miss or the naps I was forced to take because of the consistent exhaustion of just living day to day.

Feeling isolated, I looked around for resonance that’s when I found chronically ill twitter and disabled literature. Oh what a saving grace. The literature is full of people talking about this social isolation and how hard it is for people to not understand our lived experiences. But what it also did for me is it redefined care.

This is how my close social circle of friends from Instagram and Twitter became my in real life friends. Being away from them is not particularly new for me. And being ill has meant a different relationship to social isolation. This group of friends of mine we go months without seeing each other. Sometimes, weeks go by and I haven’t heard from them because they are too ill to look at their phone. This is just accepted. It isn’t taking each other for granted but in many ways it was us learning to renegotiate the immediacy of care and connection that the internet had reinforced for us. This is not to say that they didn’t show up for me. In fact without doubt, every few months, I would receive a package in the mail: some bath salts, some vitamins, some tea, a calming book, something to help the pain and  mostly something to help me get by. Small acts of care – acts that said, Ive been thinking of you. On my fridge there are notes of care from this group of people. They act as reminders. We had taught ourselves how to care for each other – when our bodies and minds needed more rest than what was acceptable in society. We had built a small circle of ways in which we reached out to support each other through life’s ups and downs and uncertainties.

Through these acts of care and through listening to each other’s lived experiences, I found myself redefining how I understood care. So when we began to talk about social distancing because of the corona virus, it felt alright to me? Given that I have spent many of the past years alone, I felt I understood social distancing and the anxiety of all this uncertainty. In a piece titled ‘Chronic Uncertainty’, Esme Wejun Wang, a writer and disabled woman, talks about how her chronic illness had prepared her for the uncertainty that we find ourselves in a COVID19 world. She says:

As COVID-19 engulfs the news, the world is poised in a moment of uncertainty the exact likes of which we haven’t seen before. Responses vary. I continue to half-joke about the apocalypse because I watched Armageddon and Deep Impact in 1998, and both made a mark on me deeper than the Aerosmith song that accompanied the former. Plenty of people are drinking. Others are working to maintain their sobriety, posting about virtual AA meetings and volunteering to speak on the phone with anyone who might fall off the wagon. One of my dear friends tells me that she is “100 percent experiencing the Melancholia Effect” by which she means that after a lengthy bout of depression, she is now “so even-keeled it is almost eerie.”

Srinidhi: I related to what Esme was saying. The uncertainty of waking up in the morning and knowing if I can cook myself a meal today had prepared me for the uncertainty of when the lockdown would end. But I began to notice the things that were troublesome even for me. These past few weeks of social distancing and lockdown, I haven’t been able to send any of my friend their care packages (since everything non-essential is shut). We have had to renegotiate our ways of care for each other. I want them to know, despite these tough times, that I think of them and care about them. How then can we reestablish new ways that retain the intimacy and thoughtfulness of the previous ways?

Is care in many ways then showing up for each other, with empathy? With love and affection? In the ways that the person needed and not in the ways we are accustomed to doing? A lot of discussion on social media has been challenging that care cannot be an individual driven practise but we must insist on caring for each other. Especially in times like now. If our neighbours are sick, the chances of us getting sick are higher. So caring for each other then becomes an essential part of our survival.

So much of disability literature is about interdependence. Disability justice activist, Mia Mingus says:

Interdependency is both “you” and “I” and “we”. It is solidarity, in the best sense of the word.  It is inscribing community on our skin over and over and over again.   It is truly moving together in an oppressive world towards liberation and refusing to let the personal be a scapegoat for the political. It is knowing that one organization, one student or community group is not a movement.  It is working in coalition and collaboration. Because the truth is: we need each other.  We need each other.  And every time we turn away from each other, we turn away from ourselves. We know this.  Let us not go around, but instead, courageously through.

Srinidhi: Care isn’t always so simple. As we have seen in the way people have responded to the pandemics of the past, the many inequalities in society are heightened. We live in a world that is designed to provide care for some people and withdraw from others. One of the largest critiques of the self care model has been that self-care has been transformed to be a way through which can rest and take care of ourselves – and return to the workforce to contribute in it. But for me, only after I became disabled did I realised that I needed to challenge this myth of independence and self-care being individualistic.

Much of the disabled community has been talking about this. The automatic door opening and closing that happens in malls and public places, office. The disabled community had to fight very hard for it. It was actually introduced into the world as an accessibility measure – so people on wheelchairs and crutches could enter and exist buildings with ease. This measure was hard fought for. And right now it is a huge boon to society – especially since we don’t want to not touch surfaces in times of Corona. So a door opening by itself is fantastic. And yet, world over, we are making lists of who must receive care – and disabled, old and sick people don’t make the list. It is also important to see who then we care about and who’s right to care we fight for. Figuring out ways where we can care for each other – where mutual aid – is possible is something the pandemic is demanding out of us. 

Rebel Sidney Black, a transformative justice activist explores the idea of how pod mapping especially in times of crises, and in this pandemic that we all share right now. She enters this through the conversation of mutual aid. She says that Mutual aid can happen between two, twenty, thousands of people. A good place to start, though, is with your “people”. Whether that’s your one best friend, some folks from church, or the handful of acquaintances who live in your building. It’s important to assess who would show up for you in a crisis or emergency, and who you’d do the same for. This is where pod mapping comes in. Originally developed by Mia Mingus for the Bay Area Transformative Justice Collective, pod mapping is a tool specifically used for accountability and dealing with harm in communities. However, it has been adapted over the years for many different things.  Especially to see who you can rely on when you are in trouble, who you’d turn to for support and who would turn to you. These groups may or may not overlap. You may also have different pods for different situations. A pod a microcosm of community, Since it’s more concrete, it’s easier to get organized to connect, make a plan, and follow through if and see who would be a part of this. Everybody who builds their pods, has certain ideas for how their pod would look like. Maybe the people in your pod are reliable, well-resourced, generous, committed, kind. Maybe they have certain skills that you need but don’t have. Maybe they just live nearby.

How then can we build a pod specific to us – that not only focusses on care giving but also care receiving.

For instance, I was in a moment of complete panic the other day because I was running out of cat food and as everybody knows we are not finding anything in these times. One of my pod people, messaged to check on me. And she remembered that I could visit online fish delivery stores. As not much of a meat eater, it never really struck me to look for delivery options for fresh meat and fish. But her ability to provide me a simple, elegant solution reminds me why she is part of my pod.

Communities of care do exist all around us. In a video about unpaid care work, UN Women shares some of the research and consequences of care work.

“Once kind of universal fact seems to be that nearly all societies is that it is on women that this kind of work falls. What we say is that it is highly feminised. We have data which says that 75% of all unpaid care work is carried out by women and girls. So this is a very unequal distribution between men and women. In fact it does penalise women, because taking on this bulk of work often carries a penalty of not being able to have a full time job with a decent wage, not being able to accumulate a pension, not being able to get all the benefits that come from formal sector work. So the penalities are many, even though the benefits to society are huge. Redistribution of care is really critical and requires us to rethinking and redoing of our social relationships.”

Srinidhi: There is also enough disabled wisdom in the world about caring for each other and interdependence. How then can we use all this wisdom, everything we have learned from the past, in this moment of our lives?

Every time we think about care and community, I think of all the stories of care that have come up through this pandemic. So while acknowledging that communities of care – that nourished us – have existed and still exist, we need to ask the question who do we leave out of our care webs? Is it the domestic worker? Is it the homeless person? The immigrant with no citizenship and living in camps?

But in a time where care is insisting on itself. Caring across self-evident communities and across community tensions is seen by individuals. We are witness to a lot of responses which use the internet to bridge the gap of resources in our physical world. Sourcing money for daily wage workers, feeding the elderly, ensuring everybody has groceries, buying groceries for our neighbours. We are also seeing many many communities respond by cooking meals for each other and ensuring people don’t starve.

“While social distancing is at its peak during the lockdown, this Gurudwara in Bangalore is continuing its tradition. The people here are distributing food packets to the needy as part of the community service. Myself Mohindra Jeet Singh, representing United Sikhs Bangalore. This seva is being done jointly with Ulsoor Gurudwara committee. We visited the joint commissioner two days back and he has given us permission to distribute langar to the needy people here in Bangalore.”

“With senior citizens some of the most vulnerable and anxious sections in society, an NGO in Mumbai is setting a beautiful example. Selfless samaritans have taken it upon themselves to supply food to senior citizens living alone. NGO called Round Table India has organised 200 volunteers to target different parts of Mumbai. Using social media they are pinpointing apartment complexes and getting food delivered to senior citizens living alone there.”

Srinidhi: These stories of people caring for each other in the physical world, bridging the gaps that the governments are not able to fill by making the extra effort to be there for fellow citizens is amazing indeed. It reminds me of how communities of care are possible and present in our lives. It is just about sustaining them and continuing to work on them.

I would like to close with a quote from Johanna Hedva:

Care so often feels as though it has to be given to you by someone else, and this can also seem how revolution feels. We wait for the change to be given to us by those in control, we hope for those in power to come to their senses. So many activists know that as power can be taken, it can be taken back. As care can be given, we can also take it. I’ve always found solace in the fact that the words caregiver and caretaker mean the same thing. We take care, we give care, and it can be contagious, it can spread. It shows us that the limit of the world is always a place to be exploded, pushed against, transformed. Meet me there, at the end, where there is give and take, and let’s follow each other into the beginning.

If you have found this episode interesting, please do share it with your friends, family and networks. Also, join us in our social media spaces where we will be talking more about pod mapping and how to build our own pods. We would also love to hear your thoughts and ideas on the subject. For all this and more reach us at http://www.thecuriocitycollective.org

Source for news clips:

Unpaid care work: https://www.youtube.com/watch?time_continue=173&v=fcqt0QzgUFU&feature=emb_title

Lockdown stories: https://www.youtube.com/watch?v=GxGHA_nT5Mc&t=1s

https://www.indiatoday.in/india/video/meet-india-s-covid-19-heroes-1660253-2020-03-27