A Column by Neesa Sunar, Peer Specialist, Transitional Services for New York, Inc.
Changing the Language That is Used to Describe Us
Many of us who find ourselves in the mental health system have shared experiences as to how we got there. To speak on my own experiences, I first displayed “maladaptive,” saddening symptoms as a teen, which then led to my first hospitalization at around my fourteenth birthday. I was diagnosed with clinical depression and medicated with Zoloft. Upon returning to school, I labeled myself as “depressed,” which elicited within me a negative worldview amongst my classmates. My experiences with mental illness seemed alien to them, so my label further served to summarize my failures in forging meaningful friendships.
My condition turned for the worse when I developed schizoaffective disorder in my early twenties. Again, this diagnosis became a box I fell into, deeming me a “schizophrenic.” Adopting this label as a self-descriptor caused me to feel broken in mind and character. And even as I remained compliant with medications and psychiatric appointments, I continued relapsing, causing me to believe that my schizophrenia would haunt me for the rest of my life. Thus, the label seemed inescapable, thus sadly accurate.
My inability to work caused me to file for disability, which was an incredibly freeing experience. I began openly disclosing my illness to anyone who would serve as an audience, and even felt proud that my struggles had a name, instead of being some amorphous spiritual curse. At the same time, the label of “schizophrenic” still caused people to distance themselves from me. Perhaps my label served as a threat, indicating that I had lying dormant within me a sense of criminality.
When discovering the peer movement in 2014, beginning as a student at Howie the Harp Advocacy Center, I learned that I had been entrenched in the Medical Model for my entire mental illness “career.” I realized that I had completely internalized and unconditionally accepted the top-down dynamics of the therapeutic relationship between practitioner and consumer. I absorbed that my mental illness diagnosis served as a label that indicated who I was and the future trajectory for the remainder of my life. And that all this was an injustice.
I became appalled that I had never even heard of the Recovery Model as a counter to the Medical Model. Even in this massive city of New York, brimming with resources, I had never encountered peer specialists or Recovery Model enthusiasts. How could this be? Many of the peers I have since met proudly disown their diagnoses as descriptors, instead using more affirming language such as, “I am a person with schizophrenia,” or “I have past lived experience.” The peer community is a group of vibrant people with dynamic personalities, free from such labels. Bearing this perspective, we flourish and grow in our own recovery journeys as we influence and support one another.
Many of us peers are compelled to take action as mental health advocates in our communities. When we fight for widespread awareness of peers and the Recovery Model, we hope to challenge people in reevaluating their perspectives of those with mental illness. Part of our advocacy efforts should also include the request for creating alternative language that is person-centered, trauma-informed and affirming. A person “suffers from” or “experiences” mental illness and is not the illness itself. And what defines mental illness anyway? Descriptive words such as “crazy,” “insane” or “dysfunctional” also serve to obscure the personhood of one suffering. When insensitive language is used, a person can internalize this and develop a sense of shame and fear. This can prevent a person from reaching out to friends, family, and/or professionals. In the worst of situations, such silence can end in immense and irreversible tragedy.
As we advocate for change in language, we must also recognize that each individual has their preference for how they should be regarded. Some people prefer to be called “disabled,” while others eschew the term. Other terms can be preferred as well, such as “mentally ill,” “other-abled,” “neurodiverse,” “chronically ill,” “in remission,” or simply “a human being.” In the same way that the transgender community has fought for preferred pronouns, so too should we demand that mainstream society develops interest in engaging the mental health community with respectful language.
We each have our individual journeys towards recovery, as we leave behind our pasts to walk towards a bright future. The hope and vision that guides us in this process can be the foundation on which we stand, as we fearlessly share our stories of recovery. Part of our stories can include how we have reclaimed our lives by adopting affirming language. If we are able to incite curiosity in our audiences, we may enjoy immense success in this endeavor.