We Don’t See Mental Illness in the Mirror and it Ruins Our Communities

I cannot speak for everyone with mental illness.

As an outspoken advocate in a city with a tight-knit disability community, I am consistently invited to attend meetings, participate in work groups, serve on committees, speak at conferences, and sit on boards, all dedicated to exploring and expanding how disability is conceptualized, articulated, supported, and included in Pittsburgh. I am very thankful for these opportunities and proudly take on the responsibility that comes with these invitations and this role. I am at the table not only trying to represent people who have illnesses akin to mine, but position myself as an advocate, activist, and leader who can secure more resources, more visibility, and more importantly, more seats at the table so other individuals with mental illness can find a place.

Specifically individuals who do not look like me.

This is me: I am a doctoral candidate in the field of education and the bulk of my work is in disability studies. I was attracted to the discipline based on my own relationship with disability. I have bipolar disorder (along with a collection of other exciting psychiatric add-ons). I have a supportive partner, phenomenal health insurance, and money has never been something I’ve ever really had to worry about. My family is affluent, my parents are well educated, I receive an abundance of emotional support, I grew up in a safe neighborhood, I have attended excellent schools from preschool to graduate school, I have always had access to medical care, and I’m a cisgender white woman. I grew up practically swaddled in privilege, which is something I am the first to acknowledge. However, even though I grew up in a very stable and safe environment it was no match for my family’s strong genetic predisposition towards mental illness.

In Pittsburgh, as in most areas of the US, supports, services, and funding allocated to empower, protect, and treat individuals with mental illness are severely limited. The “mentally ill people” experiencing the most pronounced hardships, enduring the severest struggles with their illness, and unsurprisingly facing restricted access to effective supports, are people of color, individuals living in poverty, and those with histories of trauma and/or substance abuse. In our patriarchal dominant culture, this means you are shackled in oppression five times over. These people are truly suffering from our unbalanced system and they are the most voiceless.

For these individuals, unreliable access to psychiatric medications, self-sabotaging substance abuse, damaging stigma, and grappling with a chronic illness that is incredibly challenging to manage, are all expected obstacles and pitfalls that comprise our mental illness narrative. As someone with a mental illness I can personally relate to these challenges but through a different set of experiences. I struggled with medication “compliance” from the ages of 17–21 which led to a few hospitalizations. I used substances/self-medicated in college, but campus environments are well known for normalizing and even expecting this type of behavior. And like the majority of individuals living with mental illness, I belligerently denied a diagnosis that felt synonymous with failure for years. It wasn’t until somewhat recently that I have finally accepted the fact that managing my mental illness is a full time job. I have experienced, pushed through, and learned from many of the mistakes, close calls, and consequences that naturally come with living with a mental illness. I credit most of my success to the fact that I am white, financially stable, and blessed with a robust support system (both medical and familial). Most of these variables cannot be described as things I’ve earned.

My circumstances are drastically different from those experienced by many others with mental illness because, despite having bipolar disorder, I was born with a lot of advantages.

The majority of the people who are folded into our statistical conclusions regarding mental illness, the target demographic when it comes to participating in mental health research, and the primary population from which our definition of “mental illness” is drawn, face innumerable barriers when it comes to living healthy, violence-free, fulfilling, and productive lives. In our very racist, ableist, classist, misogynistic, capitalist culture these individuals are not only denied opportunities, but also their inalienable rights. The people in these bleak research studies and featured on the “this just in” portion of the news are the same individuals on our city blocks who we are quick to label as “mentally ill.” Their mental illness is just as visible as their race, poverty, and the scars indicative of systematic oppression.

Reflecting on the work I do, examining how disability impacts diverse groups of people and how prejudice limits one’s ability to accomplish critical life milestones, and reflecting on the life that I lead, which is in part dictated by my mental illness, is a grave reminder of how dysfunctional and fragmented our system truly is. Mental illnesses themselves are sorely misunderstood and the people who live with them are routinely marginalized without so much as an afterthought. Mental illness is first and foremost a disease that can easily ruin someone’s life and this illness never appears in isolation. Humans are complex beautiful messes which means, in addition to having a mental illness, other significant variables always come into play, like race, ethnicity, sex, gender, sexual orientation, SES, history of trauma, other disabilities, etc. All of this amounts to a collection of very unique people who are plugged into a very under-funded, low-priority, highly stigmatized, and rudimentary system of care. The system doesn’t always work for me either, but due to a variety of factors, many out of my control, I am healthy, happy, and successful. You can’t see my “mental illness.” But, I’m super lucky.

I have been asked by reporters, foundation executives, and academics to weigh in on mental illness and diversity in my city. I can definitely offer an educated opinion, consult a paper I’ve written, and use both personal and professional history to have that conversation. However, I’m not actually the right person to ask. In these circles, whether you are discussing mental illness in a formal setting or chatting about mental illness with peers, there is typically a pre-established image of what or who “mental illness” looks like. On an anecdotal level, this is especially true amongst my peers who have mental illnesses themselves. When they think about “mental illness” they think of people who don’t look like them, living in neighborhoods not adjacent to theirs. They don’t look in the mirror and see that manifestation of mental illness. There is a reassuring disconnect; the relate-ability isn’t readily available. Which is predictably problematic when it comes to our cultural interpretation and perpetuation of our understanding of “mental illness” and the “mentally ill.”

The mentally ill don’t look or live like me, so I can distance myself not only physically but also emotionally. I do not identify with this community. I am not responsible to help people who are completely different from me.

This is also the manifestation of my mental illness. At least on the surface. My husband and I are homeowners. We always have food in the fridge. I have a dependable car to get me to my psych appointments and anywhere else I need to go. My neighborhood is a safe one. Yes, I am “crazy” too, but because I’m privileged this craziness is just an unflattering detail for me. Not my identity. Using our most comfortable cultural (albeit inaccurate) definition of mental illness, I am not usually lumped into the category of “mentally ill” because I have the resources to manage my illness most of the time. My genre of mental illness plays well with others, that is until I become symptomatic. People are comfortable with the “neat and tidy” version of my bipolar disorder, when my symptoms are in check. But when the cyclical nature of my illness inevitably rears its head and destabilizes my everyday life, I am reminded of how fragile my stability, and my overall ability to live, truly is. I am reminded of how my bipolar disorder becomes unsettling, inconvenient, and disruptive for other people when I’m actively living the illness. Never mind the fact that I’m simply trying to survive this illness. I am reminded of our discriminatory practice of labeling the ill for convenience sake instead of creating communities out of compassion.

The “mental health scaffolding” we are all born with doesn’t come out equally strong. Many of us are born at a disadvantage, some more so than others, and as we gain and lose resources, have positive and negative experiences, we weaken or strengthen this structure. Yes, some of it is left up to chance and of course some of it can be attributed to intentional effort, but a lot of it is the product of a system that is stacked inequitably from the get go.

How we understand, explain, and blame mental illness is atrocious.

We wield the label to condemn some and exonerate others. If a person of color is described as “mentally ill” it is all the more permissible and forgivable when they are killed by police. Practically every white man who has committed a mass shooting is not “racist, sexist, xenophobic, homophobic or an angry entitled male, he’s just crazy.” We talk about mental illness in highly prescribed, recycled, toxic ways. Our account of mental illness is inauthentic and inadequate.

We don’t just need more conversation; we need different types of conversation with different types of people holding the bullhorn.

I am a determined advocate but the mental health conversation should not stop with my experience.