Social Media, Disability and Ancestral Ethics
Dear Community—
This (loong) essay was written over the past year in many fits and starts, many parts. I am currently working on another inspired by a conversation I am having with a community member about the complexities of social media and interpersonal relationships when we are disabled. That might take me a year to write too…
But here, for now, are my current challenges with social media on a personal level, plus my research and proposed methodology. The inspiration for the form is listed at the end of the essay.
I first posted this essay when I took a month long break from Instagram in July of this past year. Then I received two new medical diagnoses and was--once again--pushed to social media to find resources in the absence of support from my doctors or the medical system. (Also the subject of another essay...) I returned. But my heart has not been in it, and the wave of unceasing negative press around these media have made my decision for me.
As of October, 2021, I have decided to delete my Instagram account. This essay contains some of the answer as to why.
“We don’t easily pursue these questions of self-exploration because we know the
answers will require us to change our lives.”
--Caroline Myss
The beginning and end is this:
I don’t want to be on social media anymore.
I don’t want to be on social media…
I don’t want to have people who I don’t know knowing my business.
I don’t want people assuming they know my business—the state of my health, my family, my faith, my home, my finances, how I am doing—because they follow me on social media.
I don’t want to be told I am going to burn in hell for sharing my spirituality.
I don’t want to be told I can’t use terms like witch or witch wound.
I don’t want to be stalked by exes and enemies and have them fucking with my real-world life because of what they find on social media.
I don’t want people to presume intimacy because we know each other on social media.
I don’t want my real-life friends to presume I don’t care about them because I am inattentive to them on social media.
I don’t want to have hard conversations on social media. About anything. At all. The spike in cortisol I experience just writing these words is enough.
I don’t want to participate in a system that makes me anxious and depressed, makes other people anxious and depressed, and exists to make us engage more so we become more anxious and depressed. When we are anxious and depressed we buy things. This is the primary function of social media. To get us to click on paid ads and buy things.
I don’t want to encourage other people to use a system that makes them anxious and depressed the more they use it. When I post I am keeping them on the app, and I am participating in their anxiety and depression.
I don’t want to participate in a business model that is bad for my disability as well as ableist, racist, transphobic, sexist and endorses all kinds of inequities and supremacies.
I don’t want to have interpersonal issues online.
I don’t want to dream about social media.
I don’t want to spend even one minute of my 2.5 hours of medically sanctioned activity a day posting on social media.
I don’t want to think about my photos, my life in photos, my art in photos, my writing in terms of how it will appear on social media.
I don’t want to feel the overwhelm of comments and messages, the pressure of folks to respond.
I don’t want the intense grief when people steal my work and post it as their own.
I don’t want to receive offers for sponsored posts, knowing that is what people are expected to do on social media.
I don’t want the immediacy of social media expectations. I don’t want the assumption of social media expectations. I don’t want the twisted grossness of social media expectations—able bodied people literally spending night and day scrolling, liking, commenting and expecting that everyone else is able to do the same.
I never liked social media. I grew up without it, I existed for most of my adult life without it.
I only started using it because I was homebound and bedridden, severely disabled, depressed and lonely.
Because when I became sick most of my real friends left me, all of my real communities disappeared and there was no true connectivity for disabled people—home visitation, support groups—offered by my medical team. Instead they offered me a facebook group.
I started using Instagram because that was the only way I was told to connect people to my work without paying for advertising.
This was after the failure of the medical system to diagnose me and treat me, the failure of the social security disability system to approve benefits (that I paid into my entire adult life but they determined I did not qualify for because I could not adequately “prove” my disability) and the failure of the vocational rehabilitation system to support my retraining for a new profession that aligns with my medical limitations (they rejected my return to school, and would not offer educational support for my business because it was established before I came to voc rehab). My family can’t afford to live on a single income, between my medical debts and student loans I have to work, even though I am often physically unable to work. I do love my work though. And social media has helped many people find my work, albeit with a ton of investment on my part.
Some good things came out of me having to engage on social media. As a person with extreme limitations physically and mentally social media can provide concentrated resources and direction as long as you vett your sources. I learned good things on social media.
Social media is where I first learned, as a disabled person, about disability justice and was exposed to leaders in the disability rights movement. (No one gives you a brochure when you become disabled, and disability justice was not ever taught in my rural Oregon education…)
Social media is where I learned about mutual aid and connected direct opportunities to support others in my urban city in ways useful, beautiful and important.
Social media is where I received excellent anti-racism resources, was connected to anti-racism education with continued impact and learned about actions in my local communities.
Social media is where I was first inspired to tithe a portion of my income each moon in the interest of restoring balance, one of my spiritual mandates.
Social media is where I learned a lot about pagan and folkloric traditions around the globe.
Social media is where I validated a lot of personal gnosis.
Social media is where some folks sent me links to submit my art and writing, and I did and now it is being published!
I deeply love some of the people I have met on social media, people I am now connected to off social media.
But with my disability comes an intense need for protection physically and emotionally, to control—especially when I am symptomatic—what comes into my life. Because everything I see or read has an impact—this is the case for us all, but with a dysregulated central nervous system the impact of seeing something can immediately cause a physical response, can make me physically ill. A response that can last for days, even weeks.
This means I have to be healthy, asymptomatic and totally rooted to engage positively in social media.
This happens far less often than I would like, and the result is that I end up engaging in social media when I really shouldn’t out of expectation/pressure to be engaged regularly. This expectation comes from both the people on social media, and the ableist algorithm which rewards consistent engagement and quick response times. So I end up on social media…
Then, when someone on social media sends me violent comments, or transphobic comments, or racist comments, or when I see a post of my art or words stolen, or when I realize someone is stalking me, my central nervous system goes into overdrive.
And the result is severe inflammation, headaches, pain in all of my joints, dizziness, heart palpitations, extreme fatigue. I become debilitated. By what I encounter on social media.
How fucked up is that?
Here is how I have been using social media for the past five years:
I make a post.
I write it on my desktop because the inflammation in my hands is usually too great to write on my phone. And being on my phone also causes a strange kind of headache not responsive to any medication and that seems specific to the phone screen.
I put a lot of time and effort into writing the post because I am a writer.
I have to go through a complicated process of copying and pasting to get the writing into a caption, and I post it with a photo or video that I likely made when I was feeling pretty good—which has been unusual since my COVID infection last year. (Here is the other deep secret we all know on social media: very little of it is happening in real time, unaltered. We curate and edit, present and populate our feed with some best version of us. I can be fevered and exhausted on my third day in bed from a crash but my post might show me out at the river dancing on a sand bar.)
I post and maybe quickly scroll down and like the first five things that come into my view. I’m on the app for less than five minutes. Then I retreat, because I have used all my energy posting.
Sometimes I can’t come back for days. When I return, it is on my desktop so I can answer comments by typing. The arthritis in my hands makes typing on my phone too challenging, and the voice to text application requires too much editing. I answer comments as fast as I can. Then I retreat again.
Or sometimes post again, knowing that the algorithm will tank my content if I mention patronage or book sales or classes. Knowing the algorithm will tank my content if I don’t respond to comments right away (yep, rapid and extended engagement is rewarded). Knowing that the average small business person spends six or more hours a week on social media, and with my limitations I just can’t compete with that.
So, I post…but is not ever a “oh look how fun it is to be on Instagram!” it is more a “I have this thing I’ve made, this writing or art or class I’ve created in the tiny bits of time I am able to work. In my isolated life I have no one to share it with, no venue for an art show, no workplace community to feature my writing or teaching that can accommodate my disability…I haven’t had these things since I became disabled in 2016.
But because it is my love and creation, I wish to share and connect with others. And I feel like the only way to share widely with others others is through Instagram, because that is the only place I know for sure lots of people will be. Also, this sharing is my livelihood, brings people to my work and encourages donations which I depend on to survive in the absence of disability benefits. So if I don’t share, I might not be able to support myself, and my family might be pushed into the same cycle of fiscal instability that led us to bankruptcy due to my illness. I am terrified to let this happen again.”
This is to say, I probably should not be on Instagram.
When my overriding impulses to engage on Instagram are about ableist expectations, fear of loss and disconnected loneliness, I should probably just stop.
Notice, I only post about my work—writing, art, research, ritual, classes, disability. I don’t share about my personal family life—I’ve tried but it makes me too uncomfortable. I don’t feel safe on social media. I am afraid to have my children’s faces all over the app, to share—even though they are older—who they are, where they go to school, what they are doing. The same with my partner, my parents, my grandparents. It feels unsafe to expose those I care about most to the violence and stalking and shaming of social media. It feels unsafe to put my beloveds into the context of an addictive application.
Social media is engineered to be addictive. The goal is to keep you on the app as long as possible, and your purpose on the app is to keep others on the app. We are connected by addiction. Social media companies created their products to deliver dopamine in specific ways. My partner works in addiction recovery, and has told me the problem with dopamine is once your baseline is disrupted, nothing in your life can ever be as satisfying again. You have to actively work to regulate, which is why so many people struggle with quitting. Once we are conditioned to receive dopamine regularly from social media—in the form of likes, which are withheld intentionally sometimes by the app so they can deliver a larger “hit” to you later—our daily lives (and their complex interpersonal interactions) can lose their luster.
My addiction to the app is less problematic than my fear—fear that if I leave my life and work will no longer be possible. This is something I clearly need to explore. But I also feel the pressure of others’ addictive patterns, the stifling expectation that we are all online all the time. And I feel a sense of responsibility around participating in that cycle of addiction and expectation for others.
I want to decondition myself from social media, then evaluate its complexities and see if there is an ethic I can engage with.
On an ethical level right now I have some big concerns: my intentional, curated content that I spend so much time creating—sharing spirituality and ancestral practices--is being used to sever people from their real lives and keep them in the thrall of an addictive dopamine delivery app with the sole purpose of earning profit for a giant corporate entity.
My question for myself is: how is this in integrity with my spirituality and ancestral practice?
I feel like maybe I have been rationalizing this relationship it the whole time, making excuses while allowing that entity to harm me and others in the process.
But I also know the relationship with social media is more complicated than that. Part of my work is to follow up this essay by discussing the challenges and benefits of social media for those of us who are socially limited or in marginalized populations. To do this work I need space and time to think.
What has come clear is I need to step away from Instagram, to remove myself from the dopamine delivery system, to investigate my fear and the stories I have been telling myself about what is possible, and to try an experiment in ancestral listening and investment in my other communities—the ones not governed by an algorithm, the ones that are connected by shared interest and mutual support.
Here is the plan:
I am leaving social media.
With my youngest daughter’s help I have been quietly removing my content for the past year. We have pulled three book length manuscripts of work off Instagram. Facebook owns any content we post, and their updated terms of use indicate they can do whatever they want with it. I would rather repurpose my content as books, art or course content than leave it for Facebook to potentially exploit for profit.
In this time away I will be focusing on creating the Dark Goddess Project with its many patron-only facets, and writing the attendant books: Dark Goddess and The Myth Path.
All of the engagement with the Dark Goddess project will take place internally, through Patreon the Wild Soul School, and the Myth and Moon letters.
Also
I am older, and I remember what life was before it was this.
More in alignment with relationship.
More in alignment with the natural rhythms of the day.
More in alignment with presence.
More intimate and less anonymous.
More thoughtful and less erratic.
More tactile and less digital.
I miss it.
And now, at least, for now, I am reclaiming it.
With love—
Lara
PS—this is not to proscribe or shame anyone for their use of social media. Particularly in a global pandemic it has become a lifeline for many and I understand that. There are innumerable complexities to social media specifically for underrepresented populations, and I have experienced this firsthand with my disability.
PPS—this list was inspired by the wonderful essay I found when I googled “I don’t want to be on social media anymore” It is by Feminist Life Coach Rae Mariah MacCarthy, and while there is some overlap in our experiences her take is unique as she actually like social media…it is worth checking out.
Social Media Research
Over the past year I have been researching the impacts of social media use. Here are some of the resources that have made a big impact on me in my explorations. I have included the two most influential papers attached in PDF form (they are in public databases online) for anyone wishing to explore in depth.
Stewardship of Global Collective Behavior—this paper is what did it for me…I had the rest of the information about addiction, depression, anxiety (also, not mentioned here but always present, privacy and security violations, censorship and creative theft), but knowing that these for profit platforms are transforming human culture in ways that are certainly not ancestral, that we can’t understand yet, with real social and ecological consequences…I have also included the PDF below.
“Neither the evolutionary nor the technological changes to our social systems have come about with the express purpose of promoting global sustainability or quality of life. Recent and emerging technologies such as online social media are no exception—both the structure of our social networks and the patterns of information flow through them are directed by engineering decisions made to maximize profitability. These changes are drastic, opaque, effectively unregulated, and massive in scale.”
https://www.pnas.org/content/118/27/e2025764118
“If you can quit social media, but don’t, you are part of the problem.” Jaron Lanier, in the Too Embarrassed podcast—the issue is primarily with the profit driven algorithm, which we can neither control nor escape
Social Media Use and the Commodification of Spirituality
This master’s thesis by Pacifica Graduate Institute student Yarrow Kae Bucans is an excellent evaluation of whether or not Instagram is in integrity with spirituality—and what the media has done to spiritual exploration. The bibliography is awesome. I’ve also included the PDF.
Social Media Use and Depression and Anxiety
This study illustrates how folks consistently connected to social media exhibited more symptoms of anxiety and depression than folks who were less connected. The more time spent on the app, the more present the symptoms.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5904786/
Increased Social Media Use Linked to Developing Depression
Young adults who increased their use of social media were significantly more likely to develop depression within six months, according to a new national study.
https://www.sciencedaily.com/releases/2020/12/201210074722.htm
Association Between Screen Time and Depression in US Adults
Results showed that moderate or severe depression level was associated with higher time spent on TV watching and use of computer (> 6 h/day)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5574844/
Facebook and Instagram are intentionally conditioning you to treat your phone like a drug
The Secret Ways Social Media is Built for Addiction
https://www.vice.com/en/article/vv5jkb/the-secret-ways-social-media-is-built-for-addiction
Hooked on Virtual Social Life: Problematic social media use and associations with mental distress and addictive disorders
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0248406
Food for thought: Consuming Happiness Syllabus—this course explores how if we place our resources in alignment with our values our quality of life can actually improve. The readings look fascinating.
https://more.sohe.wisc.edu/wp-content/uploads/2017/04/Consuming-Happiness-Spring-2017-FINAL-2.pdf
By this and every effort may the balance be regained. ALU