Reading Between the Lines of Mental Health Advocacy

Last week, I published an op-ed in the Stanford Daily criticizing Stanford’s Mental Health Week this January and pointing out the ways in which this particular campaign failed to meet the needs of students with serious mental illness. In this post, I want to elaborate on how I interpreted some of the campaign’s specific messages. These messages were articulated in various posters, flyers, and emails, but they’re pretty generic, and I’ve also seen them in plenty of other similar initiatives. Thus, this is a critique of mental health advocacy in general, not just at Stanford.

What they say: There is help.

What I hear: We have very different definitions of help.

From what I’ve observed of suicide prevention campaigns in particular, there’s an intense focus on having people who are considering suicide reach out to available resources, and don’t get me wrong–this is critically important. But there’s another, deeper, more intractable problem: what about those with chronic, severe mental illness, the people whom the system fails not once, but repeatedly? The suicide prevention campaigns I’ve seen tend to highlight what happens immediately after someone asks for help, which typically boils down to two choices: hospital or no hospital. People can be hospitalized involuntarily for 72 hours, sometimes more, if they’re “a threat to themselves or others” (e.g., at high risk of attempting suicide). This also happens following non-fatal suicide attempts. But there’s never a guarantee that a hospital will help that person. Sometimes, they do: they can keep an individual safe, provide necessary medical services, refer them to an outpatient clinic, make provisional diagnoses when appropriate, and so on. Much of the time, however, this isn’t what happens.

For starters, there’s a perpetual shortage of hospital beds, so even if someone is determined to need hospitalization, they might have to wait for days or weeks in the ER–hardly an environment conducive to psychological stability. Then there are issues of whether insurance will cover more than the bare minimum length of stay, the doctors’ competence and care in providing treatment, the systemic biases affecting marginalized groups, the possibility of iatrogenic trauma and abuse…the list goes on. Having been in plenty of hospitals, I cringe at the phrase “there is help” because in my experience, help isn’t always helpful. In fact, it often makes things worse, which is why this is yet another way in which well-intentioned mental health campaigns can alienate the mentally ill.

It’s worth adding here that the concept of help in crises becomes even more complicated for autistics, because shutdowns and meltdowns are poorly understood, as a general rule, and can be misinterpreted by first responders–with drastic consequences. During shutdowns and meltdowns, I lose the ability to talk, or to make sense when I talk. I end up saying a lot of things that I don’t mean, some of which are remnant thoughts from psychotic episodes. This psychotic thought content, combined with the disorganization of my speech, makes me seem very psychotic, even when I’m not. Encountering a first responder in this state would be catastrophic for me.

(For more details on the challenges of losing speech during crises, read this excellent article in Thinking Person’s Guide to Autism by Maxfield Sparrow.)

What they don’t say: Anything substantial about disability.

What I hear: They don’t recognize the connection between mental illness and disability, and thus, they don’t have a solid understanding of the issue they’re trying to tackle.

Mental illness is inextricably related to disability because mental illness, in its more serious forms, is disabling. People with mild or no mental illness push this issue to the side because they aren’t disabled and thus can ignore painful reality of psychiatric disability. Their voices then drown out those of people with severe mental illness, who are less able to participate in these conversations to begin with. Mental health advocacy won’t succeed without acknowledgment of and attention to disabled people’s experiences.

What they say: When we talk about this, we can create real change.

What I hear: We’re very confident that we’re doing the right thing.

While it’s immensely frustrating that this sort of advocacy neglects those with mental illness, the fact the organizers then pat themselves on the back for “creating change” is almost too much to bear. As I wrote in the op-ed, these kinds of campaigns don’t help me; they make me feel more isolated and ignored. Then I think about my friends, most of whom have pretty severe forms of mental illness, and they’re not being helped by such campaigns, either.

Imagine your house is burning down, and your neighbor offers you a Dixie cup of water. It’s not just that such a small amount of water will do absolutely nothing. It’s also that if you don’t take it, maybe they’ll perceive you as ungrateful, so you do take it, but now you’re wasting time acknowledging an empty gestureas your house is in flames. And then imagine that, having handed you exactly four liquid ounces of water, they walk away and go announce to a group of passersby, “I’m a volunteer firefighter! I’m really passionate about this issue.” Wouldn’t you be furious? Wouldn’t your blood boil? Wouldn’t you want, more than anything, to go and scream in their face and shake them and maybe do other more aggressive things?

But you can’t. Because your house is burning.

What they say: We’re here to help.

What I hear: We want to help, even if we’re not doing a great job of it right now. 

Sometimes, it really does seem like people running mental health campaigns are more interested in feel-good, performative advocacy than in addressing actual issues. But I’ve found that often, these campaigns fail not because the people in charge don’t care, but because the people in charge don’t fully grasp the impact (or lack of impact) of their work. I do my best to default to the latter assumption and voice my concerns in a critical, constructive way. Systemic problems require systemic solutions, and yelling at people is not a systemic solution. If I approach these matters assuming that everyone’s out to get me and they’re deliberately failing mentally ill people, I’m going to end up hurting their feelings at best. There’s really no downside to assuming good intentions in this case. Best case scenario, they’re receptive to my feedback and I can help develop a solution. Worst case scenario, they’re not receptive, and I’ll figure out what to do from there.

What they say: “No one’s normal.”

What I hear: Everyone is affected equally by these issues.

Like everything else on this list, these platitudes are well-intentioned, but they minimize the reality of serious mental illness and contribute to the illusion of reducing stigma, when in fact, they may be increasing it. No one is normal not because normal doesn’t exist, but because people aren’t data points and can’t be situated neatly on a graph. But certain measurements of people’s health can, and so if you look at a distribution curve for, say, severity of anxiety symptoms, you’d see that most people fall within a normal range, and then at the very ends, you’ve got people with no anxiety or with crippling amounts of it. As with any bell curve, most people’s scores are relatively close to the middle. The extreme points are where dysfunction happens. So yes, no one’s normal, but when it comes to mental health, this isn’t the point. The point is that with regard to severity of mental illness, some people are normal and some are decidedly abnormal, and it’s the latter group that needs more attention and help. We are not all affected equally by mental illness, and the failure to acknowledge this just exacerbates ignorance.

What they say: When we talk about this, we can create real change.

What I hear: We want to create real change, even if we’re not doing that yet.

Even if I don’t agree with a particular group’s major goals (normalizing mental illness, destigmatizing mental health), the underlying objective is to help people who are suffering. I’m sure there are people out there who will stick to good intentions and bad ideas, no matter how much others try to convince them to do otherwise. And I’m sure there are people out there with good intentions, bad ideas, and a willingness to change their mind. “Ally” is a verb. Alliances are a two-way street. They require real cooperation, not just a verbal commitment to shared goals. Even the most misguided mental health campaigns can have the potential to accept feedback and change for the better – but you never know unless you try.

Categories: Blog


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