Image description: Kate’s incredibly stylish orange cane, leaning against white drawers with silver handles, on a wooden floor.
This is a Patreon reward post for Kate, and was available to patrons last week. Patreon supporters at the $10/month level get a self-care post on the topic of their choice during their birthday month. These supporters make my work possible! Especially as I head into my Master of Narrative Therapy and Community Work program, my patrons ensure that I can keep producing resources and self-care content. (And wow, there are some really great resources in production! Check back tomorrow for a post about that!)
Kate and I have known each other for a few years, and got to know each other while we were both going through some challenging times (though we didn’t actually meet in person until quite a bit later, and still aren’t able to spend as much time together as either of us might like!)
Kate has been one of my most outspoken supporters, and I appreciate how she is always willing to leap in with an offer of help or a suggested solution.
Her birthday is in January, and her topic is, “maintaining intimate relationships and partnerships with a chronic illness or chronic pain.”
I struggled with writing this post because I am experiencing my own spoon shortage. I’m in the middle of a depressive episode, have been sick for the last two months, and my fibromyalgia pain has been spiking. All of these spoon-hoarding gremlins are impacting my own relationships, challenging my sense of who I am and how I navigate the world, and putting gloom-coloured glasses on my view of the future. When I write about self-care for folks who are struggling, it’s easier when I can write about a struggle I am not currently experiencing. It’s easier if I can yell back into the labyrinth from the safety of the outside. Easier, but not always better. It is a myth that the best insights come from people who have “figured it all out” – I believe the opposite is often true. When we are in the thick of it is when we have the most relevant and meaningful insider information. Our struggle is not a barrier to our ability to help each other – it is the fuel that allows us to help each other. This is one of the key principles of narrative therapy, and as much as it challenges me, I am trying to bring it into my own life. Can I write something worthwhile from the heart of the struggle? Yes. Well, I think so. Let’s find out.
What Kate asked about was maintaining intimate relationships while navigating chronic illness or pain. In relationships where one person experiences chronic issues and another doesn’t, those issues can create a significant disparity in ability and access to internal resources. (And in relationships where multiple people are experiencing chronic issues, the pressure resulting from reduced access to resources can grow exponentially.)
Being in the position of having (or perceiving that we have) less to offer often triggers shame, fear, and stress. In my own relationships, I worry that I’m not worth it, that my partners will grow tired of me. I worry that I’m “too much.” I have heard the same worry from my clients.
This anxiety is so natural, and so understandable. Our society does not have readily accessible narratives that include robust “economies of care.” Our most common narrative has to do with “pulling our own weight” in a relationship, and our definitions of balanced relationships rely so heavily on ideas of equality rather than justice. Split the bills 50/50. Take turns washing the dishes. You cook, I’ll clean. My turn/your turn for the laundry, the diapers, the groceries.
And it becomes more complicated when we consider the intangible labour of emotional support and caregiving, which is disproportionately assumed to be the role of women in relationships with men, and, since women are also often the ones experiencing chronic pain or illness, this can compound into a messy and unjust situation pretty quickly. (To back up these claims, check out the links at the end of this post.)
Thankfully, both of these problems – the tit-for-tat approach, and the unjust division of emotional labour – are being challenged by writers, activists, and communities on the margins.
In Three Thoughts on Emotional Labour, Clementine Morrigan writes, “We can name, acknowledge, honour, perform, and yes, accept emotional labour, instead of simply backing away from it because we don’t want to be exploitative.”
This is so challenging for so many of us, because we do not want to exploit our friends, our partners, our communities. When we experience chronic illness or pain, the fear that we might slide into exploitation and “being a burden” becomes amplified. Morrigan suggests that we can ask three guiding questions about the emotional labour we are offering or accepting – Is it consensual? Is it valued? Is it reciprocated?
If we can answer yes to each – if we are discussing what we need and what we can offer, if we are valuing what we are offered and if our own offerings are valued, and if there is reciprocity – fantastic!
But what does reciprocity look like in situations where there is a disparity in access to resources?
Morrigan suggests that:
“It is important to acknowledge that some of us need more care than others. Some of us, due to trauma, disability, mental health stuff, poverty, or other reasons, may not be in a position to provide as much emotional labour as we need to receive. We may go through periods where are able to provide more emotional labour or we may always need more care than we are able to give. We may be able to reciprocate care in some ways and not others. This is totally okay. We need rich networks of emotional care, so that all of us can get the care we need without being depleted. We need communities that value and perform emotional labour—communities that come through for each other. Reciprocity is a commitment to building communities where all of us are cared for and no one is left behind; it is not a one for one exchange.”
It is not a one for one exchange.
This is so critical.
And it’s so hard to make space for this. It’s hard to see our worthiness and the value we bring to a relationship when what we offer has shifted from what we were able to offer before the chronic issue grew up within us and between us.
Not only that, but it’s often hard for our partners to recognize what we’re bringing to the relationship. Not because they don’t love and appreciate and support us, but because they are also caught within the web of accessible narratives and ableist norms.
In order to answer “yes” to Morrigan’s “is it valued?” question, we need to be able to look clearly at the work our partners, friends, and families are doing for us and acknowledge that work. And we need to be able to look clearly at our own work and speak openly about it, so that it can be valued. Neither side of this is easy.
Becoming aware of the skills and insider knowledges that we develop as we live our new pain-, disability-, or illness-enhanced lives can help with recognizing, articulating, and allowing people to value our new contributions.
In A Modest Proposal For A Fair Trade Emotional Labor Economy (Centered By Disabled, Femme of Color, Working Class/Poor Genius), Leah Lakshmi Piepzna-Samarasinha writes:
“Sick and disabled folks have many superpowers: one of them is that we often have highly developed skills around care. Many of us have received shitty, condescending, charity-based care or abusive or coercive care—whether it’s from medical staff or our friends and families. We’re also offered unsolicited medical advice every day of our lives, mostly coming from a place of discomfort with disability and wanting to “fix” us.
All of this has made us very sophisticated at negotiating care, including our understanding that both offering and receiving it is a choice. The idea of consent in care is a radical notion stemming from disabled community wisdom. Ableism mandates that disabled people are supposed to gratefully accept any care offered to “fix” us. It’s mind blowing for many people to run into the common concept in many sick and disabled communities, that disabled people get to decide for ourselves the kind of care we want and need, and say no to the rest. This choicefulness has juicy implications for everyone, including the abled.”
I love her wording here. The juicy implications of choicefulness! Imagine the possibilities of this.
And yet, even as I revel in this juicy and nourishing framework, I remember my own deep and ongoing struggle with the concept of pain, illness, and disability as invitation, as superpower, as self. This radical reorganization of labour within relationships does not come easily, and one of the reasons it’s so challenging is because our concepts of fairness are so influenced by one to one exchanges.
Piepzna-Samarasinha addresses this fear later in the essay, reminding us that, “Disabled people often run into the idea that we can never offer care, just receive it. However, we often talk about the idea that we can still offer care from what our bodies can do. If my disabled body can’t lift yours onto the toilet, it doesn’t mean I can’t care for you—it means I contribute from what my particular body can do. Maybe instead of doing physical care, I can research a medical provider, buy groceries for you, or listen to you vent when one of your dates was ableist.”
We forget that there is still care, still reciprocity available within our relationships even when our ability to perform the tasks we used to, or the tasks we wish we could, has shifted.
Learning how to navigate this shift is challenging.
Searching for resources to share in this post, I was discouraged by the sheer volume of academic research performed by normatively abled “experts” on the outcomes for relationships that include a disabled partner. Once again, the centre scrutinizing the margins. It creates such a disempowering framework.
I was also dismayed by the fact that “should I date a disabled person” was one of the suggested related searches. Gross! GROSS!!!!
These are the narratives, and the social framework, within which we try to navigate our relationships as pain/illness/disability-enhanced individuals.
We need more robust, inclusive, intersectional, and hopeful resources. Not hopeful in the “look on the bright side” gaslighting-via-silver-lining sense. Hopeful in the sense of possibility-generating, hope that, in Sara Ahmed’s words, “animates a struggle.” Hope that reminds us that there are narratives possible outside of the ableist norm, and that we can write those love stories within our own lives.
The parts of ourselves that do not fit tidily into the ableist ideal show up in our relationships in many ways. In order to write those inclusive love stories of any kind – platonic, romantic, familial, or parental – we need to recognize and learn to navigate all of it. Financial, social, emotional, physical, mental – very aspect of ourselves that requires tending and care.
Chronic illness/pain/disability impacts our financial lives – we are often less able to work within normative capitalist models. The 8-5 grind doesn’t work if you can’t manage a desk job for 9 hours a day, and many other jobs are also out of reach. This adds pressure to our partners and social supports. Money is a huge source of shame and fear for many of us, so learning how to talk about requiring financial support, how to shift the balance of contribution in a household – overwhelming! Be gentle with yourselves in these conversations.
I find this particularly challenging. More than almost any other way in which my chronic issues impact my relationships, the financial instability that has been introduced as a result of my no longer being able to work a full-time job feels humiliating and shameful. I am working hard to carve out a living for myself, to build my business in sustainable and anti-ableist ways, to do what has to be done to pay my share of the bills. But my partners still take up more than what feels “fair” in the financial realm, and it’s hard. For me, engaging with writers, activists, and advocates who are challenging capitalism and neoliberalism has been helpful. Recognizing that there are other economic models available has opened up some space for me to still see myself as a contributing member of my partnerships and society.
Chronic illness/pain/disability also impacts our social lives – getting out to see friends can become more challenging. Our partners can end up taking on more social caring work for us, being the ones we talk to when we aren’t getting out (or when we don’t feel safe to talk about our struggle with others).
The aggressive individualism of our current anglo-european culture means that we are often isolated, and this can be so discouraging. Again, I struggle with this personally and I don’t have easy answers.
And searching for resources on parenting with chronic pain, illness, or disability is similarly challenging and disheartening. Parenting with any kind of divergence from the ideal is difficult. The weight of judgement, assumption, erasure, hostility, and isolation is so real. Although more supportive and inclusive blog posts, research papers, and articles are being written, the perception of a weirdly-abled parent is still one of lack, inability, and pity.
We often want to provide everything our children needs, without outside help. That’s the expected ideal. The nuclear family is still the celebrated norm, and the ideal of a normatively abled, neurotypical, stay-at-home, biological parent is still the target to meet. We may recognize that “it takes a village” but we resist the idea that part of what that village offers may be physically chasing after the toddler, lifting the baby, doing homework with the teen, helping with the rent. Just like we need to expand our conception of emotional labour and economies of care within relationships, we need that same expansiveness and redefinition within our parenting relationships and roles.
Which is easy to say, and incredibly hard to do.
At Disability and Representation, Rachel Cohen-Rottenberg writes, “What so many able-bodied feminists don’t get is how profound an experience disability is. I’m not just talking about a profound physical experience. I’m talking about a profound social and political experience. I venture out and I feel like I’m in a separate world, divided from “normal” people by a thin but unmistakeable membrane. In my very friendly and diverse city, I look out and see people of different races and ethnicities walking together on the sidewalk, or shopping, or having lunch. But when I see disabled people, they are usually walking or rolling alone. And if they’re not alone, they’re with a support person or a family member. I rarely see wheelchair users chatting it up with people who walk on two legs. I rarely see cognitively or intellectually disabled people integrated into social settings with nondisabled people. I’m painfully aware of how many people are fine with me as long as I can keep up with their able-bodied standards, and much less fine with me when I actually need something.
So many of you really have no idea of how rampant the discrimination is. You have no idea that disabled women are routinely denied fertility treatments and can besterilized without their consent. You have no idea that disabled people are at very high risk of losing custody of their children. You have no idea that women with disabilities experience a much higher rate of domestic violence than nondisabled women or that the assault rate for adults with developmental disabilities is 4 to 10 times higher than for people without developmental disabilities. You have no idea that over 25% of people with disabilities live in poverty.”
So that fear of embracing a new normal, subverting the neoliberal individualist norm, creating new economies of care and radically altering our relationships to be just rather than equal… this doesn’t happen in a vacuum. We aren’t just subverting norms and creating new relationship methods – we are doing so, as parents, under the scrutiny of an ableist and highly punitive culture. We are conscious of the fact that our subversion of norms, which may be possible within adult relationships, may make our parenting relationships more precarious, more tenuous.
Access to external help is readily available to the professional upper class – nannies are a completely acceptable form of external help, and parents are not judged for needing a nanny when that need is created by long working hours. Needing help in order to be more productive? Sure thing. (You’ll still face judgement, of course. Can any parent do it “right,” really? Nope.)
But needing help because of pain, illness, or disability?
That is much less socially sanctioned, and there are far fewer narratives available that leave space for that choice to be aligned with a “good parent” identity.
And yet, many of us do parent while in pain, while ill, while disabled. And we are good parents. Just like we have valuable superpowers of caring that can be brought into our adult relationships, we have the same superpowers of caring to bring into our parenting roles. What we do may look different than the pop culture ideal. How we do it, when we do it, who helps us with it – that might all look different. And that’s scary. But the value it brings to our kids is immeasurable.
One of the invitations that chronic illness, pain, and disability extends is that it pulls the curtain back on how harmful the neoliberal ideology of rugged individualism really is, and asks, “is there another way?”
I’m not great at saying “yes” to that invitation, but I’m getting better at recognizing it when it shows up. I don’t need to have all the answers, because I have a community around me that is brilliant and incredibly generous.
So, when I was struggling with this post, I asked my best friend and one of my partners to help me.
H.P. Longstocking has been dealing with the long-term effects of two significant concussions, and in a moment of discouragement at my own inability to write this post, I asked if she could help me get started. What she sent touched on so much of what I wanted to write about, so eloquently, and I’m ending this post with her incredibly valuable contribution. She is a parent, a scholar, and an integral part of the social net that keeps me going. I think there’s hope in how she has responded to this.
While I am no stranger to depression or anxiety, I had never experienced a chronic debilitating illness and I found that my self-care habits and techniques were no longer usually helpful or even always possible. Last summer I had several concussions. Because I had sustained so many as a child, these two accidents completely changed my life. Most of the summer I was not safe to drive or even walk as my second concussion happened when I tried to walk out of my bedroom and due to the concussion symptoms, I cracked my head into a wall. I could not look at screens, read, handle light or loud noises, and was told to stop having sex. All of my self-care habits were taken away.
I have always been an active person. Running and cycling have been my times of meditation and recalibration. Dancing brings me joy. Physical activity has been an integral part of my self-care since I was a small child. To have days, weeks, and months where walking short distances is the most physical activity I can safely manage, and some days not even that, has had a detrimental impact on my body and my emotional well-being.
I used to love to read. I devoured books and articles. I had just started my Masters and was supposed to be immersing myself in the scientific literature. I could not do any of that. I still struggle. Reading was my escape, my lifeline, my lifeblood, and I hoped, my livelihood. Now it causes me pain.
I was not prepared for the constant, chronic pain. Previously, I had headaches so rarely, I did not recognize them the few times a year I would experience one. Now, I have a hard time recognizing it because I am never without one. I find that I have my face screwed up in pain after someone reacts to me as if I am scowling at them. My coping mechanisms for the pain are to hyperfocus on something so I am unaware of most of the world around me. Unfortunately, this is usually my phone which in the long term makes it worse, but also as it gets worse, I have less self-control and ability to stop myself.
All of this has impacted my relationships. Without the ability to drive, I am often limited in who I can see and where I can go. Even without that, I am easily tired in social settings and my words begin to slur in mental exhaustion. I cannot handle loud spaces for very long, or if I do, I pay for it with days of recovery. I often feel isolated, alone, and incapable of taking care of myself, let alone being the partner, parent, and student I aspire to be.
But, I have adapted. Instead of reading, I listen to audiobooks. Instead of digesting dense theory or the latest studies, I listen to light narratives and fiction that has a plot so predicable that I can fall asleep and not miss much. I go for short walks instead of long bike rides.
My relationships have also changed.
It is hard to feel like you are not carrying your weight, especially in this neoliberal culture where people are valued according to how much productive and profitable output they can do. It is hard to be a partner with someone when you are more dependent and roommate than lover. It is hard not be able to see people, leave the house, focus on what someone is saying, or do what they are doing. It is so isolating and would be so much more so with poverty added as well. It hurts to see your kids do an impression of you which is just sleeping.
My friendships have changed. I am slowly learning to ask for help. To say no. To cancel plans last minute because it is not safe that day for me to go out. I cancel plans so often now that I am scared to make them. Much of my socialization now is online and sporadic. There is a price to pay for too much screen time. I am spending more time with people I do not have to hide my pain from. I do not have the resources to put up with mind games and people who suck energy. I have a few friends that make safe spaces for me to come and just nap around them so I won’t feel alone. My life is rich, even though my world and abilities have shrunk.
Self-care looks entirely different to me now. Instead of the sun on my face and the pounding of my feet on running paths, I sip tea wearing sunglasses. Instead of pushing through discomfort, I am learning to listen to it so that I do not make things worse. Instead of losing myself in the written word, I find comfort in story, sound and other sensory delights. Some of the people I spend time with have changed, and the ways I spend time with people have also. I do not know which symptoms will resolve and which I will have for the rest of my life, but while I grieve for friendships and opportunities lost, I am also grateful for the capacity to change and adapt, and trust that relationships worth holding onto can withstand the changes as well.
Further reading on emotional labour:
- Wondering about women’s differential experiences of pain? Check out the trans-inclusive Popaganda podcast on Women and Pain.
- And this Everyday Feminism article on how emotional labour defines women’s lives will give you insight into women’s experiences of differential expectations of emotional labour.
- And, if you want to challenge the gender disparity regarding emotional labour in straight relationships, check out 7 Ways Men Must Learn to Do Emotional Labour in Their Relationships.
- It’s also important to bring an intersectional lens to any discussion of emotional labour, and this article on Emotional Labor, Gender, and the Erasure of Autistic Women is both an excellent article on its own, and full of worthwhile links out.
- The Emotional Labour of the Closet: A Look at Trans Women’s Socialisation touches on the specific emotional labour that trans women are expected to offer.
- And we can’t discuss differential expectations of emotional labour without acknowledging misogynoir and the demands on Black women to be caregivers for their own communities and the white communities around them. Misogynoir and Black Women’s Unpaid Emotional Labour touches on this issue.
- And then, tie it back to chronic illness, chronic pain, disability. Disability and Emotional Labour talks about these issues, and although it’s an article related specifically to activism, it comes into our lives and relationships in many ways.
Image description: A chai latte with the tea leaves visible in a strainer beside a laptop with a text document visible. Text reads “Digital self-care” and there is a small Tiffany Sostar logo in the bottom right.
This post is an interview with Cynthia Khoo, a Toronto-based lawyer who focuses on Internet policy and digital rights. Check out her website here – she’s amazing!
Back in April, Cynthia and I started talking about digital self-care, and harm reduction strategies for existing in our increasingly overwhelming digital spaces. She directed me to the Note to Self Infomagical boot-camp for “making information overload disappear,” and I completed that (you can read my review of the first day of the boot-camp on Patreon!)
This interview is long, and dense. It’s fairly link-heavy, and I’ve compiled each of the links into the resource section at the bottom, and embedded them in the text for context. We also tried to include supplemental resources for folks who want to dig deeper, and both Cynthia and I hope you find some help and inspiration for creating your digital self-care plan!
(Bolding added for emphasis after the conversation.)
Tiffany—First of all, thank you so much for making time to talk with me about this stuff. I know you are super busy. On which note, could you tell our fine readers who you are and what you do?
Cynthia—Sure, and thank you so much for having me! My name is Cynthia Khoo and I’m an Internet lawyer and digital rights advocate based in Toronto, Ontario, Canada. My practice is cross-disciplinary and involves working on law and policy reform in (tele)communications law, intellectual property law (specifically copyright), and a bit of privacy law.
Tiffany—I’ve learned so much from your posts about what’s happening at the intersection of digital and legal life, and about digital security. You pointed me in the direction of the Infomagical series, and it was really helpful.
I was hoping to talk about digital self-care today, which is a huge, and kind of confusing, topic.
When you’re online, what kind of self-care strategies do you rely on?
It seems different than practicing self-care offline, but there are similarities, too. And overlap! When we first started talking about this project, you brought up the physical self-care aspect of digital self-care, in terms of ergonomics, eye strain, and posture. That’s so relevant! And impacts our experience of the digital space. Emotional and mental self-care are also here in these digital spaces, especially if we haven’t set boundaries for ourselves. It can be difficult to practice self-awareness and intentional, compassionate action online, but it feels important.
Cynthia—I’m really glad to hear that my posts have been helpful! Especially with digital security, I think it can be intimidating or overwhelming to grapple with when you first get into it, and more so if you don’t normally work a lot with tech or live on the Internet. So, I’m very appreciative of people and groups who take the time to create guides and resources (such as the Electronic Frontier Foundation’s Surveillance Self-Defence toolkits and U.S. border device security guide, and resources from Tactical Tech) to make it a little more doable for people who aren’t necessarily thinking about this all the time or who don’t look through life through that lens (and for that matter, also more doable for those who are/do!).
The idea of digital self-care is fascinating, and I think an increasingly important one. I have to admit it’s not something I particularly thought a lot about in its own right until you brought it up with me, and so I’m looking forward to digging into this with you as well.
Tiffany—I hadn’t considered digital self-care as its own thing much either, despite the fact that we started talking about this collaboration months and months ago.
For me, the extent of my digital self-care has been limiting my engagement with trolls, and balancing my exposure to negative media with hopeful media (or pictures of small animals). I think those are valid parts of digital self-care, but I have a feeling that there is more we could be doing, and we could bring more awareness, intention, and compassion to our digital self-care. So, one goal for this conversation (and future conversations that this might spark) is to start digging into what that sort of sustainable digital self-care might look like.
Cynthia—I think that’s a good natural starting point, and probably a common one, that speaks to the considerable toll that both of those things take on you over time (engagement with trolls and onslaught of exclusively negative media). They are definitely valid ways to respond.
I agree that there is more to it than that as well, but it also depends on the context of your digital environment. So, there would be different strategies or approaches of bringing awareness, intention, and compassion to your online activities, and I think doing that is what I would consider digital self-care.
You asked earlier about what are some self-care strategies that I rely on when I’m online. I had to think about that because I think there are strategies that I do rely on, but they evolved organically in response to what I felt or realized I needed at the time, as opposed to my sitting down and going “I need to implement digital self-care.” They each address a different aspect of my “digital life” (quotation marks because I don’t believe it’s separable from “offline life,” but still a useful term in this context).
For example, in terms of exposure to general media, news, politics, current events, and the overall milieu of what people refer to when they want to avoid the Internet/online media, something I’ve found useful is to identify what I will get out of reading something, and assess whether it will be worth it. During the 2016 U.S. Presidential election, I largely avoided all coverage of it entirely—*not* because it would “bring me down,” ruin my day, etc. (although it would), but because it would do those things AND there was nothing I could do about it. Not even vote.
When I first started reading news, politics, etc., to become a more “aware/politicized” person, it was because I thought it would make me a more informed and thus better person, that could contribute more to the world, etc.
But reading the latest terrible tweet and then a dozen run-of-the-mill takes on it will not help me do that or add anything in the way of value to my life or how I am as a person.
If it were a Canadian election, however, there is still a bit of news rationing I might want to implement, but it would be different because that’s something where I could have more impact or do something in response to what I’m reading, or where what I’m reading would directly inform and make me more effective at what I do or how I go through my parts of the world.
I think it’s important to distinguish between media that you will and won’t read, and identify what that rubric is, because if the criteria is “anything that makes me feel bad / depressed / angry / etc.”, then it seems dangerously easy to tip from self-care over into willful ignorance.
So, for example, I don’t find it valuable to read “plot” or “horse race” news—what happened, who said what, etc.—but I do find it valuable to read more thoughtful or analytical pieces that are more “what does this mean, what does this tell us, what insights can be drawn, what can we/you do, where do we go from here.” These pieces, regardless of the emotional impact, are still valuable because the insights are potentially transferrable beyond the particular event, and I can draw on or apply that insight in the future.
That was kind of a long answer and was just one example!
Tiffany—Yes, that idea of curating media consumption based on where we can affect change really resonates for me. I’ve been reading Jane McGonigal’s book SuperBetter, and she talks quite a bit about self-efficacy, or the confidence that our actions can positively impact our outcomes. I think that intersects with digital self-care.
Cynthia—Before going on, I would be really curious and interested to hear about your thoughts on the similarities between digital and “IRL self-care,” because the latter is also something I’ve mostly thought about passingly or when forced to, rather than a deliberate overarching strategy.
Tiffany—I agree that “online” and “offline” are not super relevant divisions, given the way we use technology at this point in time. I view it similarly to how I view mental, emotional, physical, and social self-care—they aren’t separate selves, but there are distinct strategies that I use in each type of self-care, and teasing them out into categories gives me language for weighing my choices.
Do I need the social self-care of going out with friends, or do I need the financial self-care of not spending any money?
Do I need the emotional self-care of a beloved movie and some popcorn, or do I need the physical self-care of a swim?
These things are not always compatible, and having language that pulls them apart makes it easier (for me) to prioritize. I think digital self-care is similar, and overlaps and intersects with each of the other types of self-care.
Cynthia—I think that’s a brilliant way to think of it, and makes complete sense to me.
Tiffany—And I absolutely agree that our self-care strategies often develop organically in response to growing self-awareness, situational context, or needs. The value that I see in making that invisible work visible, is that it can offer a bit of a map for folks who are struggling and may not yet have landed on the strategies that other folks have developed.
Cynthia—Exactly. Even identifying that it’s a need in the first place, I think for a lot of people would be revelatory.
Tiffany—One question I do have, and it’s something I struggle with personally, is how do you streamline the process of weeding out the stories and articles and tweets and listicles that will not benefit you, or, on the other side, how do you increase your chances of finding the thoughtful, meaningful, or useful articles that you want to read?
I have almost entirely stopped hate-sharing anything, for example, and I try not to hate-read much anymore either. The morbid curiousity, and the desire to share anger with my community has mostly left me, because I realized how much it was draining me. (I do make some exceptions for particularly egregious articles that hit me hard, though.)
But despite making that choice for myself, and seeing the benefits of it, I still sometimes find myself wading through many articles that are not enlightening or helpful, and it can get tiring. Do you have any strategies?
Cynthia—I definitely don’t hate-share or hate-read anything. That goes back to what I said earlier about value. I have friends or acquaintances for instance who will share things like “look how ridiculous this person is hahaha” because it was incredibly sexist, racist, or whatever.
I guess the value they get out of it is amusement. I don’t find it amusing though, I just wish it didn’t exist in the first place.
We saw a LOT of that during the US election. So much of that “amusement factor” shares and responses seemed directly tied to privilege, and came from seemingly liberal/progressive people who would not bear the brunt of the current presidency.
The other thing about hate-sharing—and this is definitely a result of the work I’ve done in digital rights advocacy—is that I simply don’t want to give that content and its views or perspectives more air time. I want it gone, and then going beyond that, I want in its place what I would rather see instead: an article done right, or that shows and teaches people what it means to be better and how to go about doing that (whether in the context of journalism and media coverage, or in the context of the situation being covered, i.e. police brutality, sexual assault, disability rights, and so forth). Attention only helps strengthen the message, and reifies it as a thing. When it comes to messaging, public discourse, influencing sociopolitical norms, etc., I don’t believe in fighting fire with fire, but starving it of oxygen. And then growing a tree there instead.That metaphor works, right?
Tiffany—That metaphor works beautifully, and fits with a lot of what I’ve been thinking about in terms of my own emotional self-care in the current political, economic, and social climate.
Cynthia—Now to answer your actual question! [How do you streamline the process of choosing which articles you want to read?]
So, first, I should say that I do not have the most efficient or streamlined approach to media consumption, at all.
It’s actually quite haphazard and dissatisfactory, and I’ve been meaning to do something about it for a while now. I used to rely on RSS feeds, but time and the loss of my first RSS tool, then Google Reader, and not having found any satisfactory replacements (yes, including feedly!), meant I now basically rely on Facebook and Twitter for news. So I’ve come up with different strategies for each.
On Facebook, I’ve subscribed to the pages of a lot of media outlets, so there’s actual news to begin with and I’m not wholly reliant on what people in my feed post.
If I’ve noticed that someone in my feed tends to post good (thoughtful / insightful / informative) articles, or writes thoughtful / insightful /informative status posts, or their posts tend to attract good discussions, I will star them or use that feature where their posts always appear first.
I also use the “unfollow” button very liberally—thinking on it now though, I haven’t really had cause to unfollow people for political reasons, more that I just don’t care about their vacation photos or whatever.
I also rely on a tool called SocialFixer, which is a chrome plug-in for Facebook, that has too many features to describe here but I guarantee will make your experience on the site better. The idea is that I’ve filtered out the content that adds no value and just takes up space (mentally or literally on my screen), and tried to boost the content that does add value, whether relationship-wise, information-wise, or “becoming a better / more thoughtful person”-wise.This becomes more complex though if you stop to ask yourself whether you want Facebook to have such a clear read on your preferences.
As for Twitter, I didn’t use it for the longest time because it was such an overwhelming firehose in terms of reading content, and a void in terms of if I ever posted something myself. I really only became active on twitter for work, because pretty much everyone in my field is there. And there, it actually is helpful and sometimes necessary to have “horse race” news because I do need to know what has happened / what is happening to be effective at my job.
The trick to making Twitter manageable, for me, has been lists. It’s unfortunate that Twitter doesn’t seem to have optimized that feature, because it’s incredibly useful. I made one list of everyone who seemed immediately relevant to my work or if I simply wanted to encounter more of what they wrote or posted, and that one list is my Twitter homepage.
I ignore my general /overall Twitter feed and ignore all my other lists, unless I have an idle moment and then I’ll click in just to see what’s going on. And since that one curated list has a much more limited number of people, it makes for a more manageable amount of content to take in on a regular basis.
Tiffany—I love how much you curate your online experience. The firehose as a metaphor is so relatable, but the work of putting processes in place to curate has always felt daunting. It’s encouraging to read about your strategies because they feel more doable than…. I don’t know. Getting off social media entirely because it’s a disaster and only ever communicating via Slack.
Cynthia—One more note on curating online experience. This is such a small, almost trivial (but I think ultimately not trivial, for a variety of reasons) thing, but with such outsize impact that I have to recommend it. There’s a Chrome extension called “Make America Kittens Again,” and as you surf the Internet, it replaces all photos of the current US president with photos of kittens. Life-changing.
Tiffany—Ooooooh!!! You know, that actually is brilliant and would reduce so much stress. For multiple reasons! They have done studies (including this one specifically on kawaii and attentional focus) on the effect of seeing pictures of cute animals online, and it actually does calm you down. Win-win!
Cynthia—Exactly. It does double duty—not only removing the negative, which alone is already helpful, but puts something with actual positive impact in its place.
Tiffany—On a side note, I am so excited by this framework of actionable information being prioritized in digital self-care. I think that’s something I have already been leaning towards, but you’ve given it language and that is so valuable. Thank you!
Cynthia—You’re welcome! That’s a really interesting observation. I’m not sure if that framework is a result of the general environment of digital rights, technology, and the people generally found in these areas, or due to my own personality, which has become much more actionable solutions-oriented than I naturally was when younger. I think it is partly a result of legal practice and becoming a lawyer, combined with digital rights advocacy and what I’ve learned from working in that space.
I also have a side note.
At this point, I have to say I’m really wary of using words like “negative” and “positive” in generic terms outside of specific contexts, and especially as applied to media, because people can so easily twist that into “well articles about racism are / make me feel negative” and so they never read articles about the experience of racialized people, or never read articles about how they might be and could stop being racist, and then they think they’re just doing “self-care.”
So again there’s a line there and I think it warrants a whole other discussion maybe some other time about how you distinguish what is “legitimate / valid” and what isn’t. (And I suspect there’s also potentially something that could become problematic about the idea of deeming someone’s self-care illegitimate / invalid, but that might just go to something similar to the paradox of tolerance. The line simply has to be drawn somewhere if anything is going to mean anything at all.)
Tiffany—That side note is so relevant. I am in a constant state of trying to find the right language these days—using words that won’t become weaponized against vulnerable groups, or that won’t be used to validate ignorance and further complicity in oppressive systems. Thank you for bringing that up!
And, yeah. Negative/positive, healthy/unhealthy, valid/invalid — so slippery.
Especially when you combine it with how often more aware or politicized people are accused of “being negative,” and with how often “positive thinking” is used to obscure, erase, or derail the experiences of people going through objectively difficult or traumatizing experiences that it is imminently reasonable and even healthy at certain times for them to be allowed to be cynical, depressed, angry, etc., about.
Tiffany—Weaponized positivity is the bane of my self-care work. That sludge is eeeeeverywhere, and it harms so many people.
Also, yes yes yes to how “being negative” gets used against people (see also “being divisive” or “being just as bad as the people you’re fighting,” which all feel on a similar spectrum of “shut up and manifest your best life”).
That’s why I love the idea of using whether an idea or article will provide an actionable insight, and whether it will increase understanding about an issue (which then becomes actionable in its own way) as the metric.
And on that note, I wonder how people can find hope and a sense of their own agency, so that they can recognize where they can act. A lot of folks feel disempowered in the world as it is now.
Cynthia—YES, to all above re “positive/negative.”
Oh wait, I think I misunderstood your earlier question about prioritizing the actionable in digital self-care. With the media metric specifically, that’s just something I’ve instinctively done on my own for a long time, and have only articulated it as such to myself more recently.
Tiffany—It’s brilliant. ❤
And empowering! And it ties so beautifully in with other work around building self-efficacy, self-confidence, and our sense of agency (which ties directly into how resilient we feel).
Cynthia—I was going to say, in response to earlier question about hope and agency, that I’m not sure if that’s something you can just “do,” particularly not through the idea of digital self-care. You can’t “make” yourself feel hopeful, and you can’t just suddenly feel like you have agency. I think that goes more towards your life experiences overall, and whether they have led you to possess a sense of self-efficacy, self-confidence, and belief that you have agency to change things and impact the environment around you. I have been very lucky in that sense.
In terms of recognizing where folks can act, I think again, it depends on the context.
It’s much easier to answer that question if you have a specific issue or cause, than if you just want to “do something, anything” generally.
And then I think, as with everything in life, Google is your best friend (its search function anyway, if not the multinational monopolistic company with more power than some countries).
People do not give enough attention to the fact that other people spend a lot of time writing articles and explainers and lists that lay out clearly what any given person could do to help make the world better on any given issue.
If I want to do something about one of the recent hurricane disasters, for example, I will look up one of the many guides on that, from people who are on the ground there or work in the field or otherwise know what they’re talking about, and follow their advice.
If I want to act to make the world better for people with disabilities, I will look up the myriad articles and resources written by people with disabilities about how I can help do that.
I realize that a lot of that also starts from the prior assumption that I can act and can do something. And your question seems to be getting more at how to help someone to believe that in the first place.
In which case, I’m actually not that sure.
Perhaps something along the lines of starting small, e.g. donating to a marginalized writer you love, or engaging in mild snark so an oppressive comment at work doesn’t go past in peace, accepting those small wins for yourself, and then building upon that.
Tiffany—Those are great suggestions.
I also wanted to ask about digital security, and how that intersects with digital self-care. This is a topic that I really struggle with, and I mostly just ignore (which I know is not great self-care in any area!)
How would someone get started figuring out how to keep themselves safe online? How do you determine how much safety is enough, and how do you balance the social aspect of online life with the security risks of it?
Cynthia—First off, I am by no means an expert or anywhere near on digital security, at all. I am one of those people who are grateful for those who do work on digital security as a living and produce the guides and resources that I would also be completely lost without. So just to put that out there.
Next, I think that was three questions in one!
1) How would someone get started figuring out how to keep themselves safe online?
2) How do you determine how much safety is enough?
3) How do you balance the social aspect of online life with the security risks of it?
So I will address them in that order.
Tiffany—Awesome. And yes, it was. Sorry!!
Cynthia—1) How would someone get started figuring out how to keep themselves safe online?
I think the first and most useful thing, on a psychological level and to reduce frustration once you start the process, is to accept from the outset that digital security is not a quick errand you can run.
Think of it as an IKEA project, for your digital home. Imagine the frustration if you had to build an IKEA shelf or bed and assumed it’d be a quick task you could randomly fit in between things, and then it’s 4 hours later and you’re trying to find a missing nail and now you’re not sure the shelf even fits. At that point you’d probably throw up your hands and go, “You know what, being hacked and tracked doesn’t sound so bad.”
So give yourself the time and the space to learn and to do it right. The last thing you would want is to think you’ve secured yourself digitally when you really haven’t.
It is worth it to put aside a designated evening, afternoon, day, etc. to do it, especially if you’re coming at the whole idea of digital security from scratch. You could make an event of it if that helps, like people do with other self-care things. Or make it a date with a partner, or have a cryptoparty with friends or colleagues, where everyone learns and assists as you figure it out together.
Then, again, I would point to guides online, such as the ones listed in Martin Shelton’s Current Digital Security Resources Guide.
However, I would just start with ONE or it will be immediately overwhelming. Each guide is meant to be standalone, so it should not even matter which one. Start with that, forget the rest. Follow that one guide, and if you feel you have the energy or want to do more after, you can move on to another one and use any information in there that wasn’t already in the first.
It is kind of hard to answer this question in the abstract though, because of your second question: How do you determine how much safety is enough?
Everyone has a different threat model. I believe there are guides out there that also help instruct how you figure out what yours is.
For example, if you are an environmental activist or political journalist who travels to the United States or abroad a lot, your digital threat model would likely be much higher than, say, a junior accountant who lives in the suburbs.
I should say, a hetero white male junior accountant who is not politically active nor engages in allyship, who lives in the suburbs or not.
Tiffany—The IKEA metaphor is good. And explains why I’ve found this so frustrating. I definitely was not viewing it as IKEA furniture.
Cynthia—In the spirit of actionable advice, here are some things off the top of my head people can start with:
1) Install Signal or Whatsapp for encrypted texting [easy and painless]
2) Install PGP if you think you should have encrypted email [not as easy or painless as expected]
3) Install 2-factor authentication on all important online accounts, if available [easy and painless, provided you always have your phone on you]
4) Learn / read about how to do passwords properly, and start doing that.
When I think of digital security, I think of it as two categories: The first is protection from other people: how to encrypt your data, prevent your data from being breached, falling into wrong hands, etc.
But the second is digital security in the sense of backing up my data: how can I access it if it’s lost somehow or my normal avenues to it are cut off (such as if someone confiscates my phone)?
For the latter, I would recommend an external hard-drive that you place in safekeeping somewhere, and/or cloud storage such as Dropbox.
And then the next step beyond is combining the two: protecting/encrypting your backups. There are apps that will integrate with various cloud storage services (e.g. Boxcryptor is encryption software that works with Dropbox), and there are mobile versions as well, so you can keep things encrypted and closed to others, but still accessible to you on your phone as well as computer.
3) How do you balance the social aspect of online life with the security risks of it?
This is a really good question, and a hard one. I remember seeing a series of tweets shortly after the 2016 US presidential election, along the lines of “now is the time when we have to lock down everything and know who your true friends are, and cut off sycophants and people you do not trust.”
And I more or less agreed with that, or in any case it strongly resonated with me, and I immediately thought of all these people I would not trust. But then the issue was… wouldn’t that just lead to complete balkanization, and the precise people who should be reading and learning, no longer being exposed to those most likely to post what (imho) they should be reading and learning?
Similarly, if I have a higher threat model than average, does that mean I have to cut off all online communications with friends (or family, or partners, or colleagues) who have a lower threat model, and who implement few or even zero digital security practices, or just never digitally communicate to them anything personal or sensitive?
I remember at a conference once, a speaker mentioned how male journalists in particular would display a lot of bravado around digital security, like “I don’t care what happens to me! I’ll do anything for the story!” And then she’d ask: “But what about your family? Or your sources?” Whose personal /sensitive information is also on that person’s phone. And they’d go, “…Oh.”
I think all of that is a very personal call, and may take both research into and identifying your own threat model first and what levels of risk you are comfortable with relative to that, and then maybe some conversations with people if necessary.
Tiffany—That makes sense. And I had never seriously considered how a security breach could ripple out—or in!
Cynthia—”Weakest link” is a very relevant term in this context.
Tiffany—Yeah. I can see that. That does make it so complicated.
At this point, I want to give some word of reassurance but also not in a way that undermines everything said above or the point of this discussion. I mean, at some level it is a matter of “do your best,” and yet at another level, if your best wasn’t actually adequate, then that’s not helpful.
Tiffany—Yes. I think in that way it’s a lot like any self-care or security protocols. We can only do so much, and shaming ourselves for what we can’t do is not helpful. And also we need to do as much as we can, without shaming ourselves or victim-blaming if it isn’t enough. We have to hold those difficult and sometimes incompatible truths together at the same time, which is difficult.
It’s important, AND limitations are real, AND outcomes can be serious if we don’t take care of ourselves.
I think that part can also be complicated, especially if it ended up impacting other people or if digital security is a part of the person’s professional responsibilities, for instance.
Although digital self-care is a fairly new topic of discussion, and an evolving issue, it’s an important one! Hopefully this conversation offers a start in your own digital self-care planning and practice. Share your digital self-care tips or concerns, and maybe this will evolve into a more comprehensive resource over time!
The Link List
Cynthia Khoo’s website
Note to Self’s Infomagical Bootcamp
EFF Surveillance Self-Defence toolkit
EFF U.S. Border Security Guide
Make America Kittens Again
An article from psychologicalsciences.org about the “cuteness is good for mental health” study, and the study itself on PLoSONE
The Big Think on the Paradox of Tolerance
Albert Bandura’s paper on Self-Efficacy (our belief in our ability to affect positive change in our lives)
Martin Shelton’s Current Digital Security Resources Guide
The Security in a Box guide to assessing digital threat. This guide was designed for LGBTI individuals in the Middle East and North Africa, and is more comprehensive, with step by step instructions and matrixes to fill out, than others I found.
Signal and WhatsApp for encrypted communication, and PGP for email, Boxcryptor for encrypting cloud files
Securing Your Digital Life Like a Normal Person
Guide to Assessing Digital Risks
Violet Blue has been writing about digital life for years, and her Patreon features a weekly Info Security round-up on Tuesdays.