Changing the Way We Think About Supporting People With Schizophrenia

“How many parents out there would rather learn their child had developed a life-threatening illness, than hear their child carries a diagnosis of schizophrenia?”

Historically burned-out doctors may be known to make such negative statements about schizophrenia at the time of diagnosis. If they end up being wrong, they simply re-diagnose the person with bipolar; but still their comment happened. Perhaps it challenged you to devalue your loved one.

Well, I am a mental health professional, and nothing excites me more than meeting someone else who has experiences associated with schizophrenia. I instantly know aspects of what they have gone through. It makes them a potential friend to me. Additionally, I come equipped with handfuls of tools that I think may be helpful for them. I am additionally curious to see what they might teach me about myself.

Strange thing is, I am not alone in my world view. Maybe you have heard of the international movement called the Hearing Voices Network? Originating from psychiatrists in the Netherlands named Marius Romme and Sandra Escher, this movement seeks to normalize one of the many experiences associated with schizophrenia. The movement points out that one in 10 people hear voices and that not everyone needs to be institutionalized in the mental health system as a result. In fact, the movement has proved that people who have been institutionalized for years turn out to be great leaders and advocates.

Stereotypes You Are Up Against

Maybe it is not fair to blame anyone for a negative response to the above dilemma because of all the negative stereotypes associated with the schizophrenia word. Many people think of a homeless person who is out fighting for their survival on the streets, posturing or bearing a cardboard sign beneath the underpass. Those a little more informed of the norms may think of a crowded board and care home with nothing to do but to smoke and drink coffee. Still others in some states imagine a lengthy state hospital stay or transitions through hospital recidivism and homeless shelters. Of course, there will be those who think of shows they’ve seen like “Criminal Minds” or “The Guardian.” They may conjure images of mass shooting events that are blasted through the media quicker than our very apparent national homeless crisis.

Of course, as a parent or loved one there is the stereotype of the fresh-out-of-school social workers supervised by burned out administrators who dehumanizes their patients the minute their backs are turned. Perhaps it is hard to watch this happen and easier just to stay out of it. Perhaps some of you will shield your kids from this reality and try to take care of them on your own.

Meanwhile, much of the public feels that we as a nation were kinder and gentler during industrial times when we provided mental institutions. We all know stereotypes are bad, but still they exist.

When Stereotypes Become Real

I can relate. I worked in mental health and greatly despised the life I saw many of my clients enduring. I respected my supervisors, but it never felt right. When I advanced to be able to work independently, I was so successful at advocating for better care, that it is part of what landed me in a state hospital myself and discharged to the streets.

“You see, Tim,” I was told in my second meeting with my psychiatrist two months into my state hospital stay, “One time we had someone come in here and say they were being followed by the FBI and we found out they were in fact being followed. They hadn’t done much, but they were under investigation.”

Was she really referencing me? I had tipped the press off to murder and mayhem on several occasions. Yes, many of those stigmatized scenes are real, but they are only a small piece of the picture.

Indeed, I was willing to call myself autistic long before I was willing to call myself the schizophrenic that I am. It took me 15 years of recovery before I started to embrace the “ugly” word because the stereotypes were so threatening to me.

Hard Decisions You Face

Such stereotypes may bring really hard decisions. Your relationship with your loved one, the extent to which you perceive justice in social institutions and your own stigma about mental health challenges may influence your take on what you are hearing.

Remember that even though your loved one is in an emergency state potentially flailing around with conspiracy ideas and opinions about you, they know you well enough to know how you will respond. They may sense your response and resent it. Historical problems in the relationship may become exacerbated exponentially. For a minority, there is the potential of real violence while your loved one remains in emergency state. How are you to respond if someone you love suddenly sees you as the root of all evil?

And what will your friends say? How may they judge your parenting or partnership?  How do you handle privacy needs? How have you done this throughout their lives up to this point? Do your actions further shame your loved one? How much credence do you put into the medical diagnosis? What have you heard about the word: recovery? Does your loved one deserve the best treatment, or do they need to be treated fairly, just like everyone else? What is the “best” treatment? What kind of money and resources do you have to play with? How willing are you to support someone who isn’t behaving “appropriately”? How much do you value your own safety verses theirs?

Support for You

Providers will generally refer you to the power structure of the National Alliance on Mental Illness (NAMI) for support and you will mingle with others who have faced these dilemmas for years. If you are even willing to stay involved, you can use these groups to figure the most humane decisions to make.

Often, with this referral comes a clear concept of a “chemical imbalance” to which your loved one is victim. Suddenly you are surrounded by volunteers who give their time and expect you to do the same and support their views. Accepting the power of the illness, setting behavioral boundaries, imposing medications and accepting dilapidated housing options may be the standard with which you are encouraged to comply.

Indeed, people and families are very different as are regions and NAMI boards. A variety of things can be helpful.

What It Feels Like to Find Meaning in Stereotypes

When I was going through dehumanizing stereotypical experiences, I only felt victimized. I had always thought I was critical of dehumanizing practices; but still, I was shocked! Oh, how much worse that horrific, maddening and dehumanizing treatment seems when you are in an emergency state. No one believed a word I said. I didn’t think I would ever be glad for enduring it. I could see no value to losing all my social standing and being incarcerated in impoverished circumstances. I feared for my future.

Now 18 years later, I use all those degrading experiences which lasted two years after I was discharged to the streets to convince patients I work with that I know what they are talking about. I still feel overwhelmed when I think of what I went through, but I now can say I went through them for a reason.

I often say that if I had known that my suffering could lead to a lifetime of meaningful work, it wouldn’t have been so terrorizing. Instead of waking up in night terrors, or having urinated in my bed, I could have gone through what I went through more gracefully. And I wouldn’t have been as hard to manage for all the low wage work community that surrounded me. I mean any innocent child who saw me coming would run the other way. My negative energy was quite off-putting.

You May Be Needed to Make It Possible

Meanwhile, my father had made his opinion known, he felt incarceration and mental health warehousing would be as good as it would get for me. Just like the treatment system at Montana State Hospital which was set up to help me adjust to poverty and disempowerment, it seemed like deep down he wanted to be right about his negative prediction. Still, he gave me a year of economic support to get it together. Though I could have got food stamps, my parents did help! And I still call them weekly. The memory of them being so concerned they were just enabling me while I was biking 20 miles a day to work a 40-hour week still burns.

Thank god it worked! I was able to get back to my career.

Can you imagine how great I feel with a career in mental health, a wife, a dog and a home?

Many Others Can Do It

Many others of us who struggle can do a lot of healing and earning of social empowerment by helping each other out. We can do this by using our experiences to reach others who may appear unreachable to outsiders. However, we also need to be paid for our livelihood.

Not only have I been blessed with the opportunity to find meaning from my suffering, I have seen others do it as well. I have helped employ a team of four to use their experiences associated with psychosis to help others. They outreached and learned to run groups in agencies.

What Is Missing for Schizophrenics in America?

Perhaps not everyone who struggles with experiences associated with schizophrenia naturally takes to becoming a therapist the way I have, but the mental health system really lacks a vision for sustainable roles for us schizophrenics to occupy. And I believe the first step towards creating such roles involves seeing schizophrenia as a culture rather than an illness.

In other countries the hearing voices movement has taken hold, healed many and has given people valuable roles. The premise is simple: let people who hear voices from different walks of life get together and share their experiences in un-monitored support groups. Wow, so much can come from that!

For the last 18 years I have run such support groups as a professional who openly reflects on my lived experience with schizophrenia. Like many hearing voices groups, the focus of my groups extends beyond simply hearing voices. I like to include and normalize all kinds of experiences that lead people to alternative thoughts about the way the world works.

I think these kinds of support groups help direct schizophrenics to care about the experiences of their brethren. Mutual learning and coping strategies result. Hence, letting schizophrenics acculturate and be schizophrenics is a marvelous step in the right direction.

The Need for a Living Wage

However, in my opinion, support groups are just a start to what is needed to give the culture a meaningful role. In Oakland, California, services that outreach to homeless encampments, board and care homes, agencies and shelters can invite institutionalized individuals out to support groups. Many of the people I serve off the streets of Oakland can greatly benefit from having visitors who come and bring the support groups to them in their board and care home. Then, they might then learn to come out to groups in the community and get around some of the obstacles that keep them isolated.

An organization as such can significantly train and employ schizophrenics to develop a variety of skills. It can give them a chance to make meaning from the stereotypes through which they may have lived or to which they feared, thus a training/outreach program can help schizophrenics move on to better and better jobs.

How You Can Help Your Loved Ones Realize This Vision?

I think it is important to end the medicalized view of schizophrenia. Updated research is defining psychosis across diagnostic divides as more of a syndrome or even a neurodevelopmental disorder like autism or dyslexia. This really supports the work of the Hearing Voices Network which contends that voices and other experience do have value and carry real meaning that must be addressed for healing and survival.

Believe me, there can be complex underlying issues to address.

Thus, as you live schizophrenic stereotypes through your loved one, remember that they may be transformed into your child’s mission in life. You cannot possibly be responsible for all the meanness in the system, but you can take updated research and success stories from the Hearing Voices Movement to your NAMI meetings. You can find ways to support employment for schizophrenics through empowering organizations like the one I proposed above. I ran such a program for a year and a half until the temporary funding was done. I know it can be done.

Successful Schizophrenics

There are many things that can help schizophrenics find roles that utilize their passions and interests. As a culture, schizophrenics are historically oppressed like heretics in western society. However, if we are to explore many traditional societies, we may find many of the skills that are labeled as an illness to be shamanic and spiritual. There are many wise traditions to explore in creating solutions.

I personally do not throw the tradition of psychiatry down the toilet. I myself utilize medication and work with others who do as well. I also admire and champion people who do not. However, we must offer solutions that help heal the localized abuses that have occurred within the medicalized system. One solution does not fit all.

Ultimately, I still wouldn’t mind using another word besides schizophrenia. I call my groups and my program special messages.