I visited my uncle recently during a trip to my small hometown and sat down with him for a long chat. He always aims to entertain me at every visit with passionate words, gestures and expressions but I must admit that I don’t understand everything he says. While his expressions, gestures, and words are full of life, he often speaks about a reality that is not similar to my own. My uncle was diagnosed with schizophrenia many years ago. He is 100% disabled as determined by the Veteran’s Administration (VA) and is highly compensated for his disability in which he acquired during his service in the military. I purposefully make the commitment to sit with him each time I visit. My uncle has a clear message to deliver about his circumstances, outlook, and needs at every visit when I sit there long enough and listen. For years, I have unconsciously and unintentionally deemed him and others like him as frail, victimized, incapable of caring for themselves and thus incapable of speaking for themselves. I started sitting for a spell with my uncle in recent years because it became apparent to me that my uncle’s mental illness does not define his will and should not limit his voice. I realized that I have deeply rooted issues of buying into stigma, cultural norms, and practices that contribute to mistreatment of persons like him with mental illness. Without cultivating persons with mental illness’ personal voice, their dignity, worth, self-respect, and value will never be appreciated in systems of care or sustained over time. With my commitment and repeated practice of chatting with my uncle, I realized that although his reality is often filled with delusions and hallucinations, I left the conversation every time with more wisdom and understanding of him and his life than any book I ever read or lesson I was ever taught. He has an amazing way of saying a profound statement after all the confusing chatter that made the entire conversation rich, powerful, and inspiring. When I offered him my enduring ear, his voice (message) rang loud and clear.

He indeed has a message but it seems the natural thing for my family to have done for many years was to respond to his voice pacifying, impatiently, disregarding, and insensitively. We adopted practices that concealed his voice although we were committed to protecting him and being responsible for him.  I realized recently after talking with a local community advocate, Donna Kocurek, that the age old practice of concealing the voice of the mentally ill is not only common in families but in communities as well. Although we mean well, we tend to enable the social norm of denying persons with mental illness voice and the right to be heard. We operate under the covert assumptions that they have no “voice of reason” so we should advocate on their behalf. We advocate on their behalf attempting to meet their needs while perpetuating the insufferable practice of denying them “voice”. We, the well intending advocate, promote shame, embarrassment, dependency, stigma, and prejudice with every word we speak while they are sheltered, hidden and silenced. We tell them through our well intending actions that they are incapable of advocating for themselves. We, the well intending, minimize, disregard, and devalue their voice. We exploit their pain to gain sympathy and compassion from others while stripping away their personal power and enabling the practice of powerlessness among them to thrive. We often use advocacy to exploit them for monetary gains in our words and actions at every turn. We align with pharmaceutical companies. We force them to take psychotropic medications and even engage them in experimental science. We study them all the while denying them voice. We continue to have a broken and insufficient mental health system because of it. Urgent care centers, local mental health authorities, and federally qualified health centers continue to be ill equipped to meet their mental health needs. Why? I believe because without their voice, the system will continue to fail to meet their needs. Priority to serve them will continue to be placed on the back burner within the healthcare system. Their circumstances will continue to weigh heavily on us. Their pain will continue to grow. Citizens Advocating for Social Equity (C.A.S.E.) aims to encourage, empower, and strengthen persons with mental illness to participate in the conversations aimed at helping them.

Meet my uncle. Sit down for a spell. He has a lot to say if you only lend the ear to listen. He will leave you with a profound message that will send you away in deep thought and mesmerized by his wisdom. He has voice. He has reasoning. Let’s empower him and others like him to speak up and change how we do mental health care. Let’s stop keeping them invisible, hidden, faceless, and voiceless. Encourage them to speak and we take the time to simply listen!