Isn't that kind of messed up?

Those of you who regularly read my blog have probably come to realize that I'm not exactly someone who focuses primarily on behavior change as a goal of music therapy. (And, truly, I'm not trying to bash behaviorists here.)

Image by nickwheeleroz (on holiday) via Flick

My usual focus is on building the therapy relationship  and learning about my clients through interacting with them. Behavior change, I believe, comes about naturally because the person wishes to maintain relationships with other people.


As such, I spend a lot of time thinking about and trying to come up with some ways of understanding why certain "behaviors" (or ways of being) are so indelible and resistant to change. (Mind you, this is something I regularly try to hash out in my own life as well. But I digress.)


So I started to wonder whether some of my clients have gotten so accustomed to playing the role (in their families, in the institution, in their lives) of "the messed up one" or "the problem" because, on some level it affords them the opportunity (perhaps, from their perspective, their only opportunity) to be special? 

I'm not saying this in a mean-spirited way, believe me.

Here's the thing: a good large portion of the folks I work with often don't stop "doing behaviors" that get people grumbling at them (this in spite of years of behavior modification programs and, the ever popular in institutions, active treatment).

And it made me wonder. Why?


I know my clients always have some reason (whether or not the reason is obvious to me or to any of their other supporters) for choosing the actions and interactions that they choose. 


Okay. So.


In the absence of a clear or obvious reason as to why someone is acting in some unusual or less than sociable way (a reason such as physical discomfort that hasn't been discovered or addressed, or a reaction to something we may not yet know is happening- like hidden abuse), I ask myself (and my clients): 

What's preventing this person from moving beyond this behavior? What is it about this particular way of interacting, this way of being in the world, this way of behaving...that is working for this person in some way? Why might s/he be loathe to give it up?


So I come back to the question in my mind: what if this adopted behavioral style, or interactional style, is in some way fulfilling a wish to be "special"? 


And whose wish to be special is it fulfilling? Is it my client's wish? Or is it the wish of his/her family? By not playing out the role of "special" will s/he be disappointing her/his family? Or believe s/he will disappoint her/his family? 


Is it a way to be noticed at all? In an institution, unless you act out in some way, you run the risk of pretty much sitting quietly by yourself and not having much interaction with anyone, because you're essentially not getting on anyone's nerves. That's fine if you're not all that into interactions with people, but what if you're lonely. And your choice is to not be noticed at all or to be outrageous? Which might you choose?


Right about now you're probably thinking, "No wonder that girl doesn't get anything done all day, obsessing all over the place as she tends to do."


And you'd be right. 

You don't know what people know when they can't tell you...

From the Daily Mail in the UK, here is yet another reason we can't decide we "know" what people who don't use speech know or don't. Thanks to Anne Barbano for tweeting it to my attention.

Patient trapped in a 23-year 'coma' was conscious all along

By Allan Hall
Last updated at 1:59 AM on 23rd November 2009
A man thought by doctors to be in a vegetative state for 23 years was actually conscious the whole time, it was revealed last night.
Student Rom Houben was misdiagnosed after a car crash left him totally paralysed.
He had no way of letting experts, family or friends know he could hear every word they said.

Rom Houben was trapped in a coma for 23 years and had no way of letting anyone know he could hear what they were saying (pictured posed by model)

'I screamed, but there was nothing to hear,' said Mr Houben, now 46.
Doctors used a range of coma tests, recognised worldwide, before reluctantly concluding that his consciousness was 'extinct'.
But three years ago, new hi-tech scans showed his brain was still functioning almost completely normally.

Mr Houben describes the moment as 'my second birth'.
Therapy has since allowed him to tap out messages on a computer screen.
Mr Houben said: 'All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.'
His case has only just been revealed in a scientific paper released by the man who 'saved' him, top neurological expert Dr Steven Laureys.
'Medical advances caught up with him,' said Dr Laureys, who believes there may be many similar cases of false comas around the world.
The disclosure will also renew the right-to-die debate over whether people in comas are truly unconscious.
Mr Houben, a former martial arts enthusiast, was paralysed in 1983.
Doctors in Zolder, Belgium, used the internationally accepted Glasgow Coma Scale to assess his eye, verbal and motor responses.
But each time he was graded incorrectly.
Only a re-evaluation of his case at the University of Liege discovered that he had lost control of his body but was still fully aware of what was happening.
He is never likely to leave hospital, but as well as his computer he now has a special device above his bed which lets him read books while lying down.
Mr Houben said: 'I shall never forget the day when they discovered what was truly wrong with me - it was my second birth.
'I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.'
Dr Laureys's new study claims that patients classed as in a vegetative state are often misdiagnosed.
'Anyone who bears the stamp of "unconscious" just one time hardly ever gets rid of it again,' he said.
The doctor, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, found Mr Houben's brain was still working by using state-of-the-art imaging.
He plans to use the case to highlight what he considers may be similar examples around the world.
Dr Laureys said: 'In Germany alone each year some 100,000 people suffer from severe traumatic brain injury.
'About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health.
'But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage - they go on living without ever coming back again.'
Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the 'indignity' of their condition.
But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.
Twenty years ago, Carrie Coons, an 86-year-old from New York, regained consciousness after a year, took small amounts of food by mouth and engaged in conversation.
Only days before her recovery, a judge had granted her family's request for the removal of the feeding tube which had been keeping her alive.
In the UK in 1993, doctors switched off the life support system keeping alive Tony Bland, a 22-year- old who had been in a coma for three years following the Hillsborough disaster.
Dr Laureys was not available for comment yesterday and it is not clear why he thought Mr Houben should have the hi-tech screening when so many years had passed.

Why, yes, yes I DO know it all! Why do you ask?

Image by Barnaby via Flickr

I have finally come to the realization that every single one of us has the private belief that we know the right way to do things. And everybody else who does what we do (or something not even remotely similar to what we do)  does not know the right way to do things.

One would think having worked in an institution for, oh, almost twenty-two years now, that I'd have made this discovery a good solid age ago. But...no.


And how is it (you may well be asking yourself) that I have come to this awareness and chosen to share it with you all here? Now? In this very moment?


Hmm. There must be a way to express this kindly and gently.


Let's just say that it astonishes me how frequently non-music therapist co-workers feel inclined to tell me exactly how and what I should do to be a "proper music therapist" to the clients in their care. 


I can, of course, only presume that the advice is offered in the spirit of being helpful. (If only these same people would be so helpful as to tell me a client has a horrible cold before I invite the person to come to music therapy.)


So there I was yesterday, feeling all kinds of "Humph! Who the hell do you think you are!?" and so forth, having had yet another of those sorts of interactions with a staff member. And I had to stop.


Yes. I simply had to stop.


Because, as much as I hate to admit it, I harbor the same exact rotten belief. I am just as strongly convinced that I know better than she does. 


And it's not as if I don't go around regularly making all manner of judgments with regard to how people are interacting with my (yes, my) clients, harping on about what they should be doing  with the guys and how they should be doing it, and on and on. 


And it's not as if I haven't opened my big yappy mouth about it often enough either. 


[Insert uncomfortable silence here.]


Well. 


So. There we are. 


More therapy anyone?


[In the spirit of common decency, I have to say that I also work with a lot of very supportive and cool people who seem to respect the way I do my job and expect me to know what I'm doing. But I still maintain that in our secret identities as "the one who knows", we all entertain this belief in some way or another. Which was really my point.]

What does it all mean?

The movie, "Precious", is opening tonight in various major cities. I don't think it's playing anywhere near me. I've been listening to bits about it on NPR, on Oprah and it was reviewed on the evening news. It's based on the book, "Push", written by a woman by the name of Sapphire. 

Needless to say, it's been getting a lot of good reviews in spite of being a very graphic and painful film to watch. 


The thing is, I'm not sure I really want to see it. 


And I wondered, as I watched an interview with one of the cast members, "what does the fact  that I don't want to see this film mean about me as a music therapist?"


I work with a lot of traumatized people. People who have intellectual and developmental disabilities have often experienced severe and chronic trauma. I hate that my clients have and continue to suffer this way. I hate that anyone suffers, frankly. 


It made me wonder, "Am I obligated, as a music therapist, to go and watch a film that portrays a young woman who is brutally abused by her family?"


It's not as if I'm in denial that people are abused. 


I guess it's pretty obvious I'm having some ambivalence (and guilt- ah, yes, the ever-present guilt) about my decision to not see this movie. 


The best explanation I can give (not that anybody was asking for one) is that I can only bear witness to so much trauma. I have a larger obligation (if we're talking obligations here- and I seem to be) to not expose myself to so much trauma that I can't even function as a therapist to my clients. 


Anyone else want to weigh in on this? Or am I the only one who obsesses about such things?