When I pivoted from politics to mental health, I wasn’t fleeing the tangled web of political discourse. I stepped into a space that demanded attention—a space that felt ignored, neglected, and misunderstood. Yet, I quickly realized that politics and mental health are more intertwined than I had imagined, often to the detriment of those seeking care and autonomy.
A Brief Look Back: The Shadow of Willowbrook
The dark legacy of institutions like Willowbrook State School still looms over the mental health landscape. While I never set foot in that infamous institution, the echoes of its horrors resonate within today’s system. The neglect, abuse, and dehumanization that defined places like Willowbrook served as a grim reminder of what happens when mental health care is governed by indifference and bureaucratic oversight.
Yes, conditions have improved since then. But have they improved enough? Or have we simply exchanged physical walls for invisible ones—legal frameworks and policies that restrict, confine, and override the voices of those they claim to serve?
A Movement Divided
The mental health movement began as a civil rights initiative, an effort to afford dignity and respect to those long marginalized. But somewhere along the way, the unity fractured.
What was once a collective push for equality and empowerment splintered into factions—some advocating for personal agency and peer-led initiatives, while others leaned into institutional control and compliance-based care.
This division is more than ideological. It reflects a fundamental question that continues to divide the movement:
Who gets to define what “help” looks like?
Allies or Adversaries?
Organizations like the National Alliance on Mental Illness (NAMI) position themselves as champions for people with mental health challenges. They offer resources, education, and support to families and caregivers. But the question lingers:
Do they truly represent those living with mental illness—or are they more attuned to the concerns of families and institutions?
The discomfort lies in NAMI’s support for policies like forced treatment, a practice that strips individuals of their autonomy in the name of safety and stability. For many of us who have experienced the trauma of involuntary hospitalization or medication, “help” feels indistinguishable from coercion.
Can an organization that endorses forced treatment genuinely call itself an ally?
The Battle Over Forced Treatment
Forced treatment remains one of the most divisive issues in mental health advocacy. Proponents argue that intervention saves lives,while critics highlight the violations of personal freedom and the erosion of trust such practices create.
This debate isn’t new. It’s a long-standing tug-of-war between the values of care and control, compassion and compliance.
But at the core of this conflict is a glaring absence of peer voices.
Those subjected to forced treatment are often the least consulted in discussions about its necessity. Decisions are made on their behalf but rarely with their input.
Who Speaks for Us?
Organizations like NAMI and the New York State Office of Mental Health (OMH) claim to advocate for people with mental illness. But do they?
By championing policies rooted in paternalism, these groups often amplify the voices of families and providers—those observing the illness—rather than the individuals experiencing it.
The underlying message becomes clear:
“You are not capable of managing your own recovery. We know better.”
This narrative reinforces harmful stereotypes—that people with mental illnesses are helpless, incapable of making informed decisions, and in need of perpetual oversight.
But what if the opposite is true?
What if those of us living with mental health conditions hold insights that medical professionals and policymakers overlook?
A Personal Reckoning
I speak not as an observer but as someone who has lived through the system’s cracks.
I’ve been subjected to forced treatment. I’ve felt the sting of mental hygiene laws that disregard peer voices and prioritize compliance over collaboration. I know firsthand how disempowering it is to be treated as a problem to be managed rather than a person to be heard.
It’s not that I reject all forms of care—I value treatment deeply. But care must be consensual, compassionate, and rooted in partnership, not coercion.
The current system often neglects this nuance. Policies that silence patients in the name of “stability” do more than undermine rights—they erode trust in the very institutions meant to support us.
The Stagnation of the Movement
The mental health civil rights movement, once driven by empowerment, now feels stuck.
Organizations that initially fought for liberation from asylums and state control have, over time, become complicit in maintaining systems of forced intervention.
Instead of amplifying the voices of individuals navigating mental health challenges, they’ve shifted focus to family needs, risk mitigation, and institutional interests.
Reclaiming the Narrative
If mental health advocacy is to evolve, it must center the voices of those with lived experience.
We—the people navigating schizophrenia, bipolar disorder, PTSD, and depression—must be part of shaping policies that impact our lives. Our stories are not footnotes to the movement; they are the movement.
Until that shift happens, I stand firm in my belief:
Organizations like NAMI don’t speak for me.
They speak for those who wish to control me—not for those of us striving every day to reclaim our autonomy.
The future of mental health advocacy must rest in the hands of the individuals it aims to serve. Anything less is not progress—it’s regression.
Author Info:
Max E. Guttman
Max E. Guttman is the owner of Mindful Living LCSW, PLLC, a private mental health practice in Yonkers, New York.
