Who is going to take care of us when there’s no one left who’s supposed to do it? Those in need of medical aid are largely left to their own devices, while at the same time, we learn new life is priceless. Care becomes business and information gleaned from the sick is converted into product development, which to receive funds requires a marketing strategy, which is then converted into the promise of a “cure.” Convince the sick they are on the mend, and they will return to the cycles of production and consumption sooner, which are in part responsible for making them sick. Invisible traumas that bubble underneath the skin can be left untreated as long as they don’t disrupt the comings and goings of everyday life. That is, until the trauma starts to overflow and the need for care leads the affected to unlikely providers.
Thirteen years ago, I lost my father. There was a flood of support for my mother in her grief, but the idea that I too might be in need of material support was less apparent to all, including myself. The failures of the state-supplied care, which was only ever partial and left a lot of gaps that had to be filled by her community of friends and artistic collaborators, were felt by both of us. The first step to getting help, we are told, is asking for it, but to a teenage me who’d never experienced extreme grief and incapacitation due to mental illness before, the problem was I had no idea what kind of help to ask for. One night, insomnia keeping me up as had become the norm, I found myself traversing the new online music forums that had started to gather on the newly available internet. At first, being lost in disagreements over album rankings and musician’s personal lives was a distraction from the hard realities of my new life, but later the people I encountered in the forums became a source of comfort: I had found a handful of perfect strangers who were willing to be broken down on, a mutual escape from our real lives, a chance to divulge our interior selves without judgement.
The men I talked to wrote descriptions of how they imagined my appearance — Jessica Rabbit bangs, a side slit in a red pencil skirt — and remained patiently not typing anything as I became the perfect damsel in distress pouring my heart out about how my familial makeup had gone from two supportive parental figures to just me, a girl facing the world alone. As I was not being parented at the time, there was no one around to tell me to be careful. I didn’t tell anyone I knew how much time I was spending on those forums, though the intense bags under my eyes after sleepless nights may have been a hint, nor what I was talking to these random strangers about. The context of having a supply of completely featureless strangers to reveal my deepest emotions to somehow allowed me to really and honestly reveal them. The distance the screen placed between us meant I never read pity or judgement on their face or in their tone, when they did comment on my sadder thoughts, they said little. It would be another 10 years before I felt comfortable telling people I knew in real life, off the internet, the things I had freely unleashed onto perfect strangers.
The first step to getting help, we are told, is asking for it, but a teenage me, who’d never experienced extreme grief and incapacitation before, had no idea what kind of help to ask for
The concept of self-sourced care is barely new, it’s not as though people are born with a therapist attached. Most self-sourced care requires a lot of money, time, resources, a supportive community or family environment, the ability to take time off work and everything else that many of us don’t have. Initial bereavement counseling, sometimes provided by the state, educative institutions, or the workplace, usually seeks to reassure the bereaved that with time their feelings will subside and they will no longer need that same level of care. But in reality there is no timeline for grief, nor logic.
Five years after my mother died, while living in Australia, my stoicism evaporated and I realized I could no longer manage my mental health on my own. At the time, publicly funded health care allowed residents 18 visits with a psychologist per year, and access to various community support groups. I tried it all. I joined a support group for people who’d experienced a suicide in the family, organized by Jesuits, open to people of all ages and backgrounds. I was drawn to the creative writing group they offered, while others came just to hold someone’s hand and hear you’re not alone in this. Once again, I’d found a room full of people who were willing to listen to me without judgement or pity: the difference was when they spoke I knew they understood what I was saying. When I felt strong enough to, I moved to New York.
In the U.S., it feels community support groups exist when there’s a need to keep tabs on a population. The state accumulates data on participants and uses it for policy and commercial development. Those leaving prison or the psych ward find themselves placed in groups like Narcotics Anonymous as a condition of their release, but other forms of group therapy, forms that don’t only reflect the state’s commitment to the “war on drugs,” are relatively inaccessible to those with limited means. With a post-election society statistically more anxious than ever, there’s an even bigger strain on the mental healthcare industry.
As there is not the infrastructure to care for everyone in our current socio-economic setup, emergency solutions are often forged in response to national crises. As John D’Emilio said of the marginalized minority most affected by the plague of AIDS though the ’80s, “it led to a much higher level of organization and community infrastructure than had existed before and forced the establishment — a range of ‘mainstream’ institutions — into dialogue, whether they wanted to or not.” In a search for the same kind of group I’d been attending in Australia, I discovered orphans, semi-orphans, the bereaved, the depressed, and the suicidal are expected to pay upwards of $60 for a single group therapy session. I abandoned my hunt and took to sharing tiny morsels of on-brand grief on Twitter as a release. The desire to share with someone, anyone, took me back to the days of messaging strangers in online forums, and soon I was wondering what the scope for community support online could be.
Support After Suicide — the Australian support group I attended — had begun a trial of a new “Bereavement App” for “better access to our information by smartphone or tablet.” Though it’s still in development, seemingly as an aggregation of available resources and narratives of grieving, it didn’t turn out to manifest the idea of itself — or mine. I’d imagined a “bereavement app” as something like a tinder for grievers — a digital swipe-through of people who’d experienced loss that allowed you to be partnered with a suitable loss match. The screengrabs in the email inviting me to the trial seemed to suggest something slightly less exciting, an online “grief diary” where users can keep track of their eating, sleeping and grooming habits immediately following a loss to suicide. As I was not in Australia during the trial I was unable to test out the app, but based on the screengrabs and press release it would seem that it would barely fill a fraction of the hole in the existing dearth of talk therapy options.
Though crisis hotlines operated by volunteers have existed for decades, texting can bring an immediacy to the response, and when in distress, typing can be easier than talking. The national text therapy service, Crisis Text Line, is based on the idea that teens are already texting, and far more likely to divulge their secrets to an unknown responder than someone they’re face-to-face with: “The act of writing, even if the product consists of only a hundred and forty characters composed with one’s thumbs, forces a kind of real-time distillation of emotional chaos,” writes Alice Gregory in the New Yorker, “and although tapping out a text message isn’t the same as keeping a diary, it can act as a behavioral buffer, providing distance between a person and intense, immediate, and often impulsive feelings.” The same could be said of people of any of age. Texting is much easier to monitor, on the other hand, and the idea of people relaying their deepest innermost thoughts to a stranger in an app raises many questions about security. In order for therapy to be truly effective people need to feel free to be honest, and in our current climate of screenshotting and public call-outs, along with anxieties over state surveillance, it’s wise to consider the implications of text message confessions.
Initial bereavement counseling usually reassures the bereaved that with time their feelings will subside. But in reality there is no timeline for grief, nor logic
In the current days of “there’s an app for that,” for blocking your drunk dials or guessing the age of your dog from a photo, it makes sense there’d be a few different appified therapy options. It’s almost surprising, then, given the huge jump in public knowledge of the mental health crisis, that there are so few strong alternatives being developed. Could it be that those with the resources to develop apps don’t see the value in care work? This would seem misguided, as sites such as Talkspace, and online therapy portal based in New York City, saw membership triple following the election, and the American Psychological Association has polled a significant uptick in U.S. politics-related stress through this year.
The app that Support After Suicide was trialing, interestingly, was being developed by researchers at a university, with university funding. Still, with the nature of business, it feels even the mental health apps that start out publicly or university funded could be bought out or copied into a more seamless version by private companies with murkier interests. Health apps in wide use are as aggressively marketed as new pharmaceutical products. Anti-Alzheimer’s apps interrupt our Hulu shows, advertisements for period tracker apps line our subways.
The current state of health apps is that they are not widely regulated, unless the FDA ascertains that the app is being marketed or functioning as a medical device. An app that merely provides medical information is of no interest to the agency. The legal takedown of the Luminosity app — for “preying on consumers’ fears about cognitive decline” — reveals the darkest side to our willingness to put our trust in tech to cure us. Over 35 million people were convinced by the friendly reassurance that a $14.99-per month subscription and a few mind strengthening games would help ward off Alzheimer’s. The advertising hinted at “bettering” your brain, which could be read as a cure; the app regarded itself as a medical device. This is where regulation of mental health apps is trickier, as therapy is considered more of a tool than a cure. The consumer would potentially be left to weigh up the claims made by the app’s developers on her own. As these occasional takedowns happen, markets will only get wilier as to how to slip between regulatory guidelines.
The responsibility of care for the sick continues to be a contentious issue with currently only unsatisfactory answers. The shifting makeup of the modern family, the increased individualization of modern capitalist societies and the onward push towards total privatization places the burden of care on the sick and their family or community. Modern care-work is largely left up to our own volition and is mostly uncompensated, and state interventions sound as dystopic as ever. The question arises of not only who can perform care, but also who can be trusted enough to perform it whether tech companies can, as they promise, provide solutions for the state’s failures — and whether we would trust either one even if they were further from imperfect.
As we move further and further away from state-supported health care, the tech industry does appear to be one potential source of hope. At the same time, we are witnessing the steady subsumption of self-care into mass corporatization and the proliferation of unhealthy ideas like sleep deprivation as a sign of success. Further, what allows tech companies to disrupt holes in the market is the ability to formulate solutions based on the analysis of massive amounts of data. It’s all too easy to imagine a dystopian narrative wherein our outpourings — our deepest fears and anxieties — are collected and used against us, especially as these fears become increasingly political. Will these apps really be able to help us if they are predicated on storing and analyzing our innermost emotions? The sleekness of apps (and the money behind them) makes manipulation much harder to detect. Sure, it can be a huge comfort to think that a well-designed site promising a team of listeners will be providing better care than an online music forum. But in my experience, you never really know who you’re talking to.
The space is also hyperconnected. In addition to the print books, users can scan a QR code to download e-books from the National Library, charge their phones, and peruse interactive digital boards that provide arrival times and a journey planner to find the fastest route. Screens also broadcast information on weather, news, and local events. Solar panels help offset electricity use.
xkcd.com.
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