Monday, July 26, 2010

Comments

I do try to write a responsible blog. I apologize when I make an error. I do try to be sensitive with my language. Yesterday's post took me a lot of time. I considered almost every word. Many posts are published very little unchanged from the first draft. Yesterday's post, when finally published, looked markedly different from it's first incarnation. I considered, deeply, what I wanted to say.

When it was finally published the first comment was negative. Ouch. It asked if the word 'schizophrenic' was the one I wanted to use. Well, I thought, yes. I first heard the word 'schizophrenic' in relationship to 'living a lie' and the mental strain that came from the forced suppression of real lives and real feelings and presenting false lives and false faces to the world, it was used by a priest in a sermon. He, the priest, had done a lot of work with gay men with mental health issues. Since then, it made so much sense to me as a descriptor of a way of life that is ultimately harmful.

So, in writing the post I looked the word up and found two definitions, one about a diagnosis and the other about a situation: Schizophrenia: a situation or condition that results from the coexistence of disparate or antagonistic qualities, identities, or activities: the national schizophrenia that results from carrying out an unpopular war. The word seemed to mean what I wanted it to mean.

But I don't work much in Mental Health circles, so I did another search. I wanted to assure myself that there wasn't a campaign against the use of the word and I found no such campaign or really anything much written about the use of the word in literature or language. Then, I called a friend who works in Mental Health and read her the piece and asked for her advice. She felt the word was used both respectfully and correctly.

I used the word.

Because I took so much care in writing the piece and thought I had said something important, I was stung that the first feedback was about expression, not content. Further that the author of the comment did not identify themselves. Further still that the author did not comment on the content or context of the word. Finally that the author did not tell me what the issue was, why it was an issue or where I could find out more information.

For a while I thought about changing the wording. Then I thought that I'd write this post instead. I'd already written today's post but bumped it to tomorrow. I wanted to ask if the word was misused, OK, I'm ready to learn. Tell me how or why it was misused in the context. Let me learn.

Rolling Around in My Head is meant to be a discussion about disability and family and life. It tries to be, though my hands, careful when being provocative. I fail sometimes, but give me credit for trying. I am an old friend of apology but I will not apologize for apologies sake.

I always try to remember my responsibilities as a blog author, please remember your responsibilities as a comment maker. Go ahead and disagree, even tell me off, I'm really OK with that. But don't leave me scratching my head wondering what you meant. Tell me.

34 comments:

Amanda said...

I don't know why that particular commenter said what they said, but I know the word jumped out at me too.

There's two ways it doesn't make sense.

First off, the use of schizophrenia the way you used it, comes from a misunderstanding where people think schizophrenia means "split personality" (which in itself is a not too great way of saying someone's multiple/plural). It doesn't mean that.

Second off, it's using the name of a condition, to describe a situation that has nothing to do with the condition. That can be a problem even in contexts where the word itself isn't a problem when used to refer to a condition (although I think it [i]is[/i] a problem when used to refer to a condition, but that's a whole other comment). So you don't need to find a campaign against the use of the word, in order to figure out that this word in this context isn't the best choice. There is a huge body of writing about disability labels being used as metaphors for other situations that have nothing to do with them. It is similar to when people use "blind" in situations that have nothing to do with visual impairments -- it's not that they mind being called blind, it's that people often use 'blind' in ways that have nothing to do with it and that reinforce misconceptions about actual blindness. (Much as this use of schizophrenic reinforces misconceptions about schizophrenia on several different levels, considering that it's not just schizophrenia as metaphor, but misconception-about-schizophrenia as metaphor.)

I hope some of that made sense.

Also, it's very common that when people bring up some aspect of oppression about a certain kind of people, then instead of taking it to heart the person says that the other person brought it up in the wrong way. (On a lot of blogs I read it's called the "tone argument".) And then everyone pays more attention to the feelings of the person the comment was directed at, or on how horrible it was of the other person to bring things up (or to bring them up "that way"), rather than on the actual content of what was said. It's always good to be careful of that.

And by the way I liked your post. That particular word just jarred me, but I didn't comment because I didn't have the spoons.

anne said...

I am surprised no one else picked you up on this, but am glad you want to find out more. I wonder if it is more a UK thing. I did some online research to back up my concern re: misuse of the term schizophrenic and could find little which is puzzling.

I think Amanda explains it very well. This article might interest people. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1963407/

Everyone I have met with the diagnosis is uncomfortable with the misuse of 'schizophrenic'. Unfortunately, I can't find much online from survivors. I have a mental "illness" myself, not schizophrenia, and identify as a survivor.

The diagnosis itself is contraversial - some want to abolish it because it is unhelpful both in treating it and in how it is stigmatised and misunderstood. http://www.psychminded.co.uk/news/news2006/oct06/Abolish.htm

Hope this helps understanding and discussion.

Alison Cummins said...

I don't mind when other people use the word "schizophrenic" to refer to double lives or to cognitive dissonance or situations that create it. It's a common usage and succinctly expresses what is meant. It used to annoy me but doesn't any more.

I don't use "schizophrenic" that way myself, because I'm quite literal-minded. Schizophrenic does not mean split personality, and historically this has been a point of confusion, so I don't use the word "schizophrenic" to describe split-personality type situations.

Also, I know enough schizophrenics that the first meaning of "schizophrenic" to me is people struggling with a particularly frustrating set of mental symptoms. This meaning is so strong that it wouldn't occur to me to use the word any other way.

Interestingly, "schizophrenia" does mean "split mind." Kraepelin invented the word to refer to a split between affect and cognition. Schizophrenics may not express emotions, or the emotions they express may not seem to match the situation (e.g. smiling at bad news). As such "schizophrenia" might technically be an appropriate metaphor for many types of situation, except that very few people know that meaning.

Schizophrenia is often greatly distressing. Not knowing where your body begins and ends; not being able to recognize yourself in a mirror; being subject to constant, screaming, demeaning voices. It can be quite horrible. That subjective experience of distress may be part of what you want to convey, again seeming to make "schizophrenic" an appealing metaphor. However, again, I'm not sure how many people think of the subjective experience of schizophrenics - they probably just think disdainfully of street people - so I don't know that the word would actually communicate what you want it to.

Does this help?

Dave Hingsburger said...

This is great, thanks for taking the time to explain the sentiment and give me a context for the concern. It's important to discuss, using full sentences, issues regarding language and sensibilities. I appreciate the effort put into the responses so far. I can say that, knowing what I now know I won't use the word in that way anymore. I will also say that I will continue to take care with my posts (as I mentioned I did a fair bit of research before using the word) but will not guarentee that I might not err, again, in the future.

Tamara said...

I've used the word in the same way many times, and I'm going to try not to now ... Great education. I shouldn't admit this, but I think my previous misunderstanding was probably primarily from "Sybil".

Andrea S. said...

Dave,

Not about the word "schizophrenia" per se, but about what the author perceives as "abelist language" in general:

http://www.feministe.us/blog/archives/2010/04/30/blogging-against-disablism-day-addressing-ableist-language/

Not having schizophrenia myself, I can't presume to comment from that perspective. I do know that as a deaf person it bugs me when people use the word "deaf" in a metaphorical way because this word, too, tends to be misused in that context as well. People use it metaphorically when they mean to say that someone is intentionally REFUSING to listen--a very, very different concept than a person who merely happens to be unable to hear sounds. This makes me want to say, "EXCUSE me, I'm deaf and I still know how to listen! I'm not the one with a problem! Just because I can't hear doesn't mean that I can't listen!" (in the sense of paying attention to a person and taking their problems seriously)

I also cringe when people misuse the word "autistic" as a metaphor, though this isn't nearly as common (yet) as "deaf" or "schizophrenia" as metaphors. I've seen it used to imply that a person has no empathy for others. And of course if you know a person who is autistic, then it becomes clear after you get to know them that, if anything, many autistic people are HYPER empathetic to the point of being overloaded / overwhelmed by how strongly they feel for others. The difference is not lack of empathy, the difference often is that they EXPRESS it very differently from the way that nonautistic people do, in ways that aren't recognized or understood by people who haven't learned to read autistic body language.

Andrea S. said...

Anne,

Your second link to psych mind didn't work for me, I think because it's truncated. Can you translate it into a tiny url? (http://www.tinyurl.com) Or hypertext link it?

Thanks

Janet said...

I don't comment often but I'd like to say that I'm impressed with you outright asking for feedback and information. I saw that comment yesterday and also wondered what that problem was. Most blog authors I read would simply dismiss a small comment that no one else noticed. You, on the other hand, opened yourself up for this discussion. Perhaps that's why I find you interesting, you aren't afraid to grow.

Catriona said...

The way I see it, the 'two meanings' argument is very like when someone uses the word "retard" and makes the excuse: "oh, but I wasn't talking about people with a learning disability - that word can also be a general insult, meaning stupid or worthy to be despised - I don't think people with learning disabilities are like that."

Miss Ginny Tea said...

In addition to various other resources that people have left, there's a series on FWD that is helpful: http://disabledfeminists.com/category/ableist-word-profile/

Anonymous said...

The comments you've gotten have been illuminating - and I will think carefully before I use the word schizophrenic again. But at the same time, I think perhaps it actually was exactly the right word. It expresses the depth and disfunctional agony that having to compartmentalist your life causes unlike any other term. I am sorry that your commenters, so far, fail to reflect the need find the terms that really express that experience. I've lived with a person with schizophrenia (defined in the clinic sense) and I've tasted the dissociation that comes with having to deny ones self. I'm not saying this well - but I suppose I am just sorry to see that the word probably shouldn't be used in both ways. I don't have a good substitute. Does anyone else?

FridaWrites said...

It also jumped out at me; as Amanda said, schizophrenic is not the same as presenting oneself two different ways (multiple personality disorder). Bipolar often gets used the same way.

Because of the common vernacular, people often think schizophrenia is something other than what it is (can include psychosis, hallucinations, delusions, paranoia, free association in language, catatonia, etc.).

While I don't think you were using it in this way, many people use the term or borrow other ones when they're making fun of/criticizing someone--and in that way it further stigmatizes those with mental illness too. Stigma against mental illness is difficult to overcome, even when you have family or friends close to you with it.

Amanda said...

As far as the "need to find just the right word", I can't really sympathize with that. I have a condition that affects expressive language. I always have to struggle far more with words than it takes for the average person to struggle with just one word to find the right meaning.

I'll give the same advice though that I give when people ask me "But if high functioning and low functioning are so offensive, what should we use?!": Explain it in simpler words. For the HF/LF thing, that means saying something like "people who have trouble speaking" or "people who can drive" (but never, never assuming that those two things cannot coincide, or that either one of those goes with a whole bunch of other skills or difficulties necessarily). For "schizophrenic," it just means using a few more words than usual to explain what you mean about the situation. I hear people give this explanation for why they use "retard", too. It's just not acceptable to me except sometimes in certain extremely specific cases that don't apply here.

Also, it's not fair at all to put the burden of coming up with a new way of saying things, onto the people who object to the word. We're not the ones who were going to use it, so we're not even the ones who know what the person meant, let alone the people who ought to be coming up with new ways to say things.

Ellen said...

I read your blog every day, but have only posted a few times. As others have said, when you used that word, it did jump out at me. I do understand why you used it, but it is not like you to use someone else's diagnosis to describe something that way.

But I admire you addressing the matter and opening yourself up to comments from your readers. That's why your blog is so great.

Just a little word in defense of the anonymous commenter who started this discussion. If the subject is close to home for this person, maybe they did not want to in any way to be identified.

Hector said...

Ellen, Dave did not use a diagnosis he used a situation - there is a difference. I wonder if people realize that they sound a lot like finger shaking second grade teachers? Here someone opens up and asks for feedback and very few acknowledge that someone has made themselves vulnerable, instead they launch into mini lectures. Everyone's got a good point and I've learned as I've read, I just shake my head and wonder how Dave is feeling after all this. Does anyone else care or are they just pleased to have had a platform to be superior? I have never commented before but felt I needed to now. Dave, you are helping me raise my son, thanks from a grateful father.

Anonymous said...

It is helpful to read these comments clarifying what the word schizophrenic means. As others have said, it does not mean split personality even though the term is often loosely tossed around to mean that. That usage serves neither those with schizophrenia nor those with dissociative identity disorder (formerly called multiple personality disorder) well. Both groups of people wind up feeling misunderstood and insulted and often left more vulnerable instead of more supported.

Too often people with schizophrenia are misunderstood and made fun of for (unfortunately among many other things) having multiple personalities. People who have had to dissociate their identity to the point of having completely separate aspects of their personality are too often inappropriately treated with medications designed for schizophrenia instead of respect and appropriate treatment.

Dave, thank you for your thoughtful responses and approach to this situation. Conversations like this help me learn to listen and speak better.

I don't usually use the "Anonymous" option when leaving a comment for your blog but this topic continues to be such a sensitive one for people with either of these conditions that I will for now.

Dave Hingsburger said...

Hector, thanks a lot for your comments but I really am ok with the tone of the discussion here. I feel priveleged to be 'parenting' with you!

CJ said...

I have worked in mental health for 20 years. I would not have used that word in the way it was used.

It may be "common usage" but it is used incorrectly.

Schizophrenia is a devastating mental illness. It is not "split personality" it is not "living a double life" nor is it "multiple personalities.

It is what it is.

Psychotic disorders characterized by distortions of reality and disturbances of thought.

I say this without hostility or unkindness.

Anonymous said...

The wheeliecrone says-
Dave, your opinion belongs to you. It is about you and your life. What I think of your opinion belongs to me. It is about me and my life.
I am fairly sure that you already know these two things. I just want you to know that I, too, know them.
When you speak of your life and your experience, the language you use is the language that seems most applicable to you. If other people find a word offensive, perhaps they should consider how different their experience of life is from yours. And, of course, different words are used differently in different countries. There is an old adage about countries being separated by the use of the same language - each country adapts a language to suit its particular needs.

Moose said...

My first comment is selfish: I made great pains to explain how schizophrenia is not the same as a "multiple personality" in a comment in the mentioned previous post. That people did it again here makes my head hurt, mostly because I'm having a personal issue where no matter what I cannot seem to make myself understood, and then other people come along, say the same thing and it's understood. But that's my issue.

My 2nd point is to compare this to the earlier discussion of the word "retard". When I pointed out that it's a word that has existed LONG before it was used as a word of hate, and mentioned other definitions and uses, like in music scores dating back hundreds of years, many of your readers lambasted me for OKing a word that "should never ever ever be used!" [because, what, we're gonna go back in our magic time machine and tell JS Bach, "don't write 'retard' there, it means something bad"?].

Words are like thoughts. It's not their existence that matters, it's what you do with them and how you use them. Yes, there are some words that are solely words of hate. But they're the tiniest fraction of the English language. Most words we're now recognizing as "hate" words are ones being misused. Let's focus on stopping words from being misused, not on the words themselves.

gina said...

Dave:

It looks like you have had a very long day. I started to reply to your request for input this morning and now, look, it is late evening. How time flies!

I know that you, of all people, would never intentionally use language in a way that would demean or hurt others. However I was a little surprised at your use of the word schizophrenic. Since I specifically train direct care staff in people first language as well as on not using language that stigmatizes adults with any mental health label, I do find myself extra aware (hypersensitive, perhaps) of how words are used.

You have heard a lot all day about schizophrenia and I can't add much to that discussion. However I did think you might like to see the NAMI Stigmabusters web page. They do some awesome work, right down to encouraging people to write letters to television producers, advertisers and the like. It's at:
http://www.nami.org/template.cfm?section=fight_stigma

Enjoy and I look forward to every post, every day!!

Gina

FridaWrites said...

Because of the questions in the post, many of us probably formulated a response in our heads before we read the comments, and it's coincidence that we said the same thing.

I can't speak for everyone, but I did not read comments yesterday but responded directly to the blog post today. I live at an extraordinary level of pain and could not concentrate on comments other than the first one this morning--truly I am suffering. Others may have been busy and not reading everything either.

So if I repeat myself or others it's not from lecturing, maliciousness, or anything else than in the spirit of exchanging information or perspective. It's what I'm capable of at the time. And when I'm not commenting, often it's because I'm not capable of it physically or cognitively because of the physical symptoms. In other words, it's not about Dave or other commenters if I or others make a mistake.

Lori said...

I rarely comment and some may disagree with me, but here's my two cents.

There are two definitions for schizophrenic, one the diagnosis and the other "a state characterized by the coexistence of contradictory or incompatible elements". (Neither definition is slang.) Leading a public life that was completely contradictory to your private life fits the definition precisely. It would be different if you had written that your life was "like a schizophrenic", that would have been offensive as you would have been making a comparison to a diagnosis. But, using it to describe the contradiction was, IMHO spot-on.

We should not get so caught up on a word that we abolish all of it's definitions. Words should be used correctly, never in a disparaging way. I guess my point is that it is not the word -- it is how it is used. There are many words that can be used to hurt, it doesn't necessarily mean they are "forbidden" words, rather, there are forbidden uses.

anne said...

Hi Andrea and others, sorry re: link - I also should have put them both in html so you can click through. Here is the second one about abolishing the schizophrenia label. http://bit.ly/biXXDM

Andrea S. said...

Thank you, Anne, for the follow-up link.

Lori (and to the Anonymous who posted at 9:30 pm July 26), I don't think people need to "abolish" or "forbid" any word of the language, or any of their specific definitions. I don't think anyone is talking about legal censorship here. But at the same time, I think those of us who wish to be sensitive to the feelings of others are still doing a decent thing (as in, "common decency that any of us could do" not saintly) in being aware that, even though words may have certain dictionary meanings, or certain commonly understood meanings, and personally intended meanings, sometimes what people hear may be a very different thing. And if there is a whole class of people who are likely to feel hurt or misunderstood or offended by certain terms, or by certain usages of certain terms, then it becomes polite behavior to be more careful with the use of that language then at least in a public forum.

To give an example: some people swear in private when they are among friends or others who know them well and are not easily offended by swear words. Some of these same people, however, avoid swearing in public. Not because anyone has forbidden them to, but because they know that some people do get bothered by listening to swear words and they want to respect those sentiments.

Similar concept: Just because a word may have a valid meaning in your own personal lexicon inside your head, or perhaps among friends who understand you well, doesn't necessarily mean that it remains polite or appropriate language in contexts where you don't know the people as well. I would never forbid you from using whatever terms you choose--even if I could. I'm not a government, so I can't! But just as it is your right to use the terms you like, it is also everyone else's right to object if they dislike it. Just as it is your right to object in return and so forth. It remains your choice how to react to all that.

L. said...

(I missed the blog post initially so didn't see it until after this post.) Dave, I agree, it's not a word I would use in that context either, for the many reasons people explored here. I think your meaning aligned more with the misunderstood nature of schizophrenia as "split personality"; I would avoid that connotation since it perpetuates an incorrect understanding of the true nature of schizophrenia.

However, your first anonymous commenter was not helpful when s/he raised the issue. Anyone who reads this blog knows that you're thoughtful about sensitivity to others--more than just about anyone I know of, honestly. If I'd chosen to comment I would have taken the time to explain myself and reach out to you, as Moose did, rather than just leave a passive-aggressive sentence with no explanation. We all know you didn't use that word with any intent to hurt or misinform, so the polite thing to do is to explain our differences and reasoning.

Lene Andersen said...

I think the word was used respectfully and correctly, but I don't live with a mental illness, so in a way, my opinion doesn't really matter. I've posted about the word 'spaz' and how I find it offensive and have had readers think I'm ridiculous for it (of course, these were able-bodied readers, but nonetheless). From my research, there seem to be a cultural difference in terms of the acceptance of using this word in the UK versus North America.I needed to get feedback from somebody who lives with CP - even called the OFCP, but nobody got back to me. Anyway! Before I got sidetracked, my point was that I think you did due diligence in terms of checking it by calling someone in the mental health field.

and also. That post was amazing. I didn't comment and feel bad about it, but I'm still thinking about the points you brought up. And about how sad it makes me that you and Joe had to live in silence for so long.

Andrea S. said...

To L., in possible defense of the anonymous commenter who started this dialogue in the post prior to this one

Now, I don't know who that person is or what was on his/her mind. But just to propose a gentler alternative:

Perhaps the person was new to the blog and has not read enough to realize how incredibly open Dave is to dialogue, debate, controversy, honest self-examination, constructive criticism, and the rest. Perhaps the issue hit too close to home, which would make it hard for anyone to express themselves coherently or explain themselves even if normally articulate, respectful, kind and fair minded in other contexts. Maybe that one line was all the person could sincerely manage in the heat of the moment.

Since we don't know anything about the person other than that one line, I think we're not really in a position to be harsh or to judge. There is too long a list of possible reasons why the person didn't elaborate further.

L. said...

Andrea, could be. I think you could tell a lot about Dave's sensitivity to the non-mainstream just from the post in which "that word" was contained. But even if it was a very hot button for Anonymous, I don't think I was harsh about him/her. I simply said their post was not helpful, and I'll stand by that. The beauty of the internet is that if you see something that offends you, you can take your time before responding to it. No one is perfect and sometimes we don't, but let's face it, if you want to see someone change their usage of a word you need to explain why you object to that usage and what you'd like to see.

Also, Dave, I agree, you did due diligence by checking with your friend in the mental health field. Surprised she didn't flag it for you but can think of a few reasons why--obviously its context is a little more complicated than words that are just outright used as slurs.

Anonymous said...

Dave,
I just recently discovered your blog and I will become a follower. You put so much of your heart and soul into your writing.

For what it's worth, I think your use of the word "Schizophrenic" was a perfect description of the "coexistence of disparate or antagonistic qualities, identities, or activities" that you lived with for so many years. I don't think that you were in error or that you believed that Schizophrenia is the same as DID (although I know that is a common error). You were not in any way demeaning or belittling the painful reality of Schizophrenia.

Our society has reached a point that we have to agonize over the use of so many words for fear of inadvertently offending someone, and so many seem almost eager to be offended. It makes it difficult to want to commit anything to writing. Thank you for risking it!

Having spent almost 10 years of my life in a secret relationship, I am aware to some extent of the pain you and Joe faced. I know how hard it is to feel connected with a family that lives in a different reality than you do.

In response to the original post, I thank you for reminding me to talk to my son about having Down syndrome and the challenges it brings. He's 5 and I'm not sure how much he understands, but I've tried to expose him to books as well as to other people who have Ds and he is very aware of the word. I think he's just beginning to understand that many things are more difficult for him and he's very angry about it. He doesn't have the verbal skills to express this and instead often lashes out in anger.

I remember hearing the story of a child with Ds who believed that they would eventually outgrow it because they had never seen an adult with Ds. What a sad thing!

At one time I prayed for my son's healing from Ds. I have changed this prayer to simply asking that God make Jon into the man He created him to be. After reading the creation story about the fall being due to eating from the tree of the KNOWLEDGE of good and evil and Jesus saying that we all need to come to God as trusting as children, I'm not sure who has the real disability. Maybe we were all meant to have one more chromosome and we lost it in the fall.

Carol

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