I’m not sure when I first understood that my brain worked differently from other people’s, and that the feelings I experienced weren’t like the feelings other people experienced. There was no defining moment I can point to, no instance of ‘aha,’ just a slow sense of deterioration, interrupted by periodic visits to counselors and doctors and medications that came in rattling bottles.
And a sense of embarrassment about this thing I had that required fixing, and should be hidden. My father ducking his head in the doctor’s office, me taking my pills on the sly on sleepovers so no one would ask me what they were for. If I pretended it didn’t exist and compressed it down as much as I could, everyone would think I was normal; but I was so blaringly, obviously, glaringly not normal. It blew up in my face over and over and over again until I came to the realisation that the only way to survive was to live openly.
Because silence no longer worked for me. And silence, the gaping hole that surrounds mental illness in society, leaves people with mental illness in a void, whether they want to come out or not. It makes it harder to realise that you are not alone, to seek help, to articulate your experiences to friends and family. It perpetuates the stigma that makes it dangerous to live openly with mental illness, isolating people at a time when what they need most may be support.
On 29 June last year, Afua Pili Busisiwe Ayo Monsanto took her own life at 15. Siwe struggled with depression for much of her life, and as her mother put it, she snapped that day.
I, her mother, think therefore I am. Siwe, my black butterfly, FELT therefore she was.
In Siwe’s honour, Bassey Ipki started The Siwe Project, focusing on mental health issues affecting the Black community. In honour of Siwe, today we observe No Shame Day, and talk about mental illness; whether our own experiences, those of family and loved ones, or the cold hard statistics behind the reality of mental illness not just in the United States, but around the world. The Siwe Project has three key goals:
I. The creation of peer developed and directed, culturally competent mental health awareness campaigns targeting people of African descent
II. Increasing access to self-advocacy tools and resources for individuals of African descent seeking and accessing mental health treatment.
III. Providing insight to loved ones into the unique lived experiences of people of African Descent with mental illness
The experience of mental illness is not one size fits all, and the diagnosis of such shouldn’t be either, but it often is. Most framings of mental illness specifically surround white bodies and white experiences, particularly those of white men, and other people are shoehorned in. Often, the consequence is radical misdiagnosis; whether diagnoses are missed entirely or applied incorrectly, other genders, people of colour, and nonwhite people often get short shrift when it comes to the identification and management of mental illness.
Lack of cultural competence means not identifying warning signs early, and not communicating appropriately with patients. It means failing to recognise the impact that social factors like racism can have on mental health, and refusing to acknowledge that cultural attitudes about mental illness vary considerably. Like Siwe, I showed early signs of emotional distress and attempted suicide. Because I was a member of a race, and a community, that valued treatment for mental illness even as it shamed me for having it, I got treatment and interventions that meshed with my social and cultural identity.
Bassey is fighting stigma through storytelling, but more than that, she’s working to bring about a global shift in the way mental illness is conceptualised, identified, treated, and managed. That shift necessitates a radical change in the establishment; it is not enough to remove the shame associated with mental health diagnoses, to allow people to live openly with mental health conditions. It is not enough to change the way people think about mental illness to create safer and more welcoming spaces.
It is also necessary to address the failings of the medical establishment, and to expand the definition of diagnosis and treatment to ensure that people receive culturally competent, and appropriate, care. What is good for one person is not good for another, what looks like depression in one person may be something more complicated. This requires not just telling personal narratives to expand the minds of the public, but confronting the very systems behind the handling of mental health services.
We are here and we are not ashamed and we will keep fighting to stay alive and build a world where those of us who are ashamed are safe to come out. And we are demanding better treatment for all mentally ill communities, not just our own. That’s why I stand in solidarity with the No Shame Campaign today; because we must work together to help each other.
Solidarity across communities is about more than joining the chorus of voices on a designated day, like today. It’s also about reaching hands out the rest of the time, supporting people in their endeavors, and amplifying their voices to make sure they’re heard. One advocate standing alone is easy to ignore. An advocate surrounded by people of all backgrounds broadcasting her words forces the world to pay attention, and that’s my goal with participation in No Shame Day, and the Siwe Project in general; because while I am not a member of the global community of people of African descent, I can stand beside members of that community with an amplifier. Because it is hard to fight stigma when you are left to stand alone in a vortex of silence.
Today I think of Siwe and the many people in my own life I have lost to suicide, the high price they have paid for a society, and a mental health system, that is painfully inadequate.