If you aren’t learning something new every day, you must be unconscious.
It seems like every couple of months I go through a huge learning curve. I went through a big learning curve with the larger disability community about two years ago. I went through a learning curve with Black Lives Matter, and I have gone through several learning curves with schizophrenia, but none quite like this most recent one.
A couple of days ago I watched a whole group of mental health advocates have a “debate” more like a “fight” online. The problem was the term “unmedicated schizophrenic” the term is in a video created by a woman who has schizophrenia. When another advocate saw the video, she took issue with that word choice claiming that it plays into all the stereotypes about hearing voices.
After reading nearly three hundred comments, I am going to say, that in the future I don’t think I am going to use the words, “mental health advocate” to describe my work. It seems that everyone who has a mental illness is now a mental health advocate and unfortunately some people seem to think advocate equals expert. Not only is this confusing, but it can also be dangerous. For those people recently diagnosed who are looking for solid information about their illness, this thinking every advocate is an expert can lead to inaccurate information or even harmful information.
I don’t want to be confused with an expert. I am not an expert. I am one woman who writes about schizophrenia. I write about my life with it, things I see in the news about it, things I see in movies about it, and in the media and society in general. I have experience and opinions. I don’t have research and facts (unless I am quoting someone else).
So, not being known as an advocate is something I am going to work on in 2018. But beyond that, I learned a great deal from the exchange that went on between all of these advocates about the use of the term, “unmedicated schizophrenic.” I learned more about Intervoice, the International Hearing Voices Network (there is a USA chapter). I learned about the blog, Mad in America. And I learned about an organization called, Recovery Learning Community or RLC. All of the websites associated with these organizations are worth your time to check out.
I have known for a long time about people who are anti-psychiatry and also I have been aware of Intervoice since I saw a member’s TED Talk a year or more ago. Intervoice members believe that there are other ways to deal with hearing voices besides psychiatric intervention. Anyone who has been reading my blog for any length of time knows that I am all in with the medical model. I can’t imagine my life without antipsychotics.
I am willing and able to accept that people hear voices differently than I do, though. For me, psychosis (the only time I hear voices) always (I do mean always) leads me down a path where I am a danger to myself. So for me, trying to talk to my voices, getting control over my voices, and the other coping mechanisms described by Intervoice might mean that I die. I’m not joking, and I’m not hyperbolic. I might die by trying something besides medication. Is that worth it? No, of course not.
But, do I find it fascinating that some people can talk to their voices and get those voices to “act” differently? Yes, I think that is remarkable. It leads me to wonder, though do these people have the same illness as I do? (I think they refer to it as a condition and not an illness. They don’t agree with pathologizing the hearing of voices).
There might very well be many reasons people hear voices, and the way I hear them (and all the people I know who hear them have a similar story as mine), might just be one example. I don’t know. (This is also problematic for people who are psychotic and have the symptom anosognosia which is present in severe mental illness and has to do with lack of insight into the condition. In other words, it means the person doesn’t see themselves as sick. I have this symptom when I am psychotic, but not at other times). Suggesting that hearing voices is a normal experience to someone who is psychotic, could lead someone who desperately needs psychiatric intervention away from getting it.
I plan to read more about the people who can interact with the voices they hear and change outcomes. I have always thought that hearing voices was a sign of severe mental illness, but maybe it isn’t in all cases. I’m not one to doubt the experiences of someone else. I know schizophrenia isn’t the same for everyone and apparently, neither is hearing voices. For some people, it appears not to lead to a place of sheer terror or actions that could easily harm or kill the hearer.
I am hoping I never hear voices again, but reading about people that do provides a safe enough distance. Lifelong learning…it’s a real thing.