Who's in charge here?

I realize this is going to sound like I'm ranting. And not only that, I'm fairly certain I'm going to sound judgmental. And you know what? Maybe I am. This issue is so profoundly important that I think it deserves a bit of a rant, so I'm going to ask you to bear with me today, because this is serious.


It's not exactly news to anyone that I work with people who have intellectual and developmental disabilities (many of whom also happen to have autism and many of whom do not use speech). When I'm talking about clients (below), I mean it to apply not only to doing music therapy with folks who have a whole bunch of labels, but I'm talking about working as a music therapist in general.


So, why am I carrying on? Let us commence with the rant now, shall we?


I have an important question I want us to consider: Is it our clients' jobs to listen to us? Or is it our job to listen to our clients?


I ask this, because I've been noticing what seems to be a tendency in music therapists to go in to a new session and expect their clients who have severe disabilities to just do what they ask them to do. As in, "here are the planned activities/events, and here's what I think you ought to do. Your job, client of mine, is to perform these tasks/activities. And my job is to get you to do that. Period."


Well. Okay...but...


Let's pause a second and think: whose need are we here to meet?


If we want to teach our clients to be better listeners, are we modeling that by listening to them? If we want to help our clients to be be better at paying attention, how willing are we to pay attention to them? If we want people with significant disabilities to engage with us, what steps are we going to take in order to engage on their terms? 


If we can't understand the language someone is speaking (particularly if their language does not contain words), are we truly serving that person when we expect him/her to do what we ask before we even make the effort to try to learn about who they are?


Again I ask the question that my college music therapy professor asked us all the time: whose need are we here to meet? And is that need best met by our coming to our clients in a music therapy session and expecting that they will do what we'd like them to do? 


Or is that need best met by asking that person to help us learn about who they are (even if they don't use speech to say it) and then creating the musical space within which our client can find a way to communicate and then making a point of hearing it?


We are music therapists. Let us honor that fact and work hard to develop skill in the art of listening. 


Let me end by saying this: when we work with folks who confuse us (and even if we think we know what's going on), the first place to start- always, always, always!- is by paying close attention and listening as hard as we can! 

Violence in the lives of people with disabilities

Gosh, I hardly finish publishing a blog about music therapists getting hurt on the job and I hear this on the news. It's truly a horrible, often hidden epidemic, and it must be stopped.


FLATBUSH (WABC) -- There are allegations of abuse Sunday against a state-certified care facility in Brooklyn.

The family of a 43-year-old mentally and physically challenged man claim he was brutally assaulted at the Institute of Community Living in Flatbush, and no one is saying how it happened.

Kimberly Creary is determined to get to the bottom of things, how and why her mentally challenged brother, Colbert, ended up hurt.

"His eye was closed, purple and burgundy, it was horrible," she said.

Colbert, who has limited speech, has lived at the Institute of Community Living for 15 years. The small, state-run facility houses those with mental and physical disabilities.

Kimberly got a call from staff on September 23, saying Colbert had been rushed to Kingsbrook Jewish Medical Center, suffering from an eye abrasion. But when she saw him, she was stunned.

"They don't know what happened," she said. "They told me he got up in the morning, took a shower and was fine and came to downstairs with eye like that."

Darrel Creary remembers his uncle being very agitated.

"He was very angry, pushing everyone away," he said. "I tried to feed him, and he wasn't trying to have that."

Frustrated, Kimberly called police. Officers from the 67th Precinct went to the facility, but Kimberly says staff told them that Colbert was not able to talk and was sleeping. So the officers left.

Then, a preliminary investigation by the state indicated that a worker had been placed on administrative leave, although it's not clear why.

The facility says that because of confidentiality laws, it could not discuss the matter. But Kimberly believes there is more to this story, possible criminal negligence and assault. She is meeting with the district attorney Monday.

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WEB PRODUCED BY: Bill King

No matter how many people in staff and support positions get hurt doing this work, folks with disabilities are way more vulnerable to abuse. I'm not saying it's okay that anyone gets hurt, but this is a difficult reality, and it needs to keep being noticed and brought out into the open so it can stop happening.

When we are injured by our clients

One of the scarier things about being a music therapist is that sometimes we get hurt on the job by our clients.

This is something I've been meaning to write about for some time now, but I've been procrastinating. I mention it now, because, recently Todd Henry, a man identified as a music therapist, was actually killed by one of his students.

It's a real issue when we provide services to people who are not always able to control their behavior. Or those who have gotten used to using violence as a means of communication. Or who have serious mental illnesses and aren't able to distinguish between what is reality and what is generated in the mind.

I've been hurt at times by my clients. I've been smacked, bitten, scratched, had my hair yanked, my fingers squashed, I've been head butted, grabbed, in a headlock, pushed, kicked, and pinched. Depending on the day, the situation, the context, and how violent the situation was, I've felt varying levels of distressed.

In general when I get hurt, my immediate reaction is that I feel uncomfortable, angry, frightened, ashamed, uncertain, violated, powerless, and with a general sense of not being sure how to proceed after it has happened (other than to say, "we need to stop the session for today.").

Because I work the way I do (using an object relations approach), I absolutely believe that the feelings I experience in reaction to getting hurt are more than likely the feelings my clients either are, or have, experienced in their lives (hello, projective identification).

As such, part of moving forward with my clients after violent behavior is addressing what happened in the following session(s), talking about how it impacted me and what I think my client may have been trying to communicate to me (i.e., that s/he was feeling powerless, ashamed, angry, frightened, etc.).

I work with people who live in an institution. By that very fact alone, they have experienced trauma. Never mind the many other forms of physical, sexual, emotional trauma they've likely endured over the years. When a person doesn't use speech, and doesn't feel as if s/he's being listened to, and s/he is fresh out of coping skills, violence is sometimes the result.

This issue isn't talked about much, if ever, when we're in school and learning to become music therapists. It's also not a topic that I see coming up in music therapy conferences either.

One of the reasons I don't usually bring it up is that it scares people. Another reason is that I don't like the idea that people see my clients' violent behavior as being a factor of their disability. I don't think most of my clients are violent (and not all of them are) because they have autism or some other intellectual or developmental disability. I believe it's usually a result of their life and not having learned better ways to cope with extremely challenging situations.

So I'm bringing it up today. And I'm wondering what your experiences (whether you're a music, creative arts, or other sort of therapist or supporter/caregiver) have been with this issue.

Mental Disability Rights International

I don’t even know where to begin.  I happened to find a video on the CNN siteabout the hideous conditions for children and adults with disabilities in institutions in Serbia .  I’m not sure how to link to it, but if you want to search for it the title is “Tied to cribs, left to die.”  A group called Mental Disability Rights International works to ensure that the rights of people with developmental and psychiatric disabilities are respected around the world, and they are the ones who created this video.  

I urge you to go to their website and read their reports and see the very painful videos they have made of the dreadful lives of the people left (apparently to die) in the various facilities in Paraguay, Romania, and Turkey (among others).  

Horrified does not even begin to describe my reaction to the fact that in 2007 this level of inhumanity and injustice continues.    On the other hand, why should it shock me?  It is true that we have moved a long way in this country- a very long way from the deplorable situations you will see if you visit MDRI’s website and read their reports.  But the tremendous prejudice felt toward people with disabilities remains.  The abuse stays constant.  The inability to see beyond labels, the belief in lack, limitation, inability...it goes on and on.  

And again, I wonder, why would it shock me?  When our own country is apparently not concerned with the fact that torture is considered an acceptable form of treatment for prisoners of war.   Why should I be surprised at all?

Conflicting reports

Yesterday I was listening to “This American Life” on NPR, and they had a segment called “Hit me with your best shot”.  A family spoke about their decision to put their child, who has autism and is rather aggressive in his interactions, into an institution.  What made listening to this particularly poignant for me was the fact that I was on my way to visit my friend  who has autism and who has lived in an institution since he was a youngster.  

I’ve always been anti-institution on principle- even though I’ve worked in one for 19 years.  To me, institutions are not a good place for people to live.   At the same time, I struggle with this belief, because, sadly, for some of my clients, living in an institution has been better for them than living with their families.   Worse, a lot of the folks we send out to the community to live in group homes have ended up coming back, often not in great medical shape.

The other thing I’ve started to think about is that there are a lot of people living in residential facilities who seem to function better when there are a number of carers involved.  I don’t mean that someone should have a different carer every day.  I just mean that people with a lot of needs that aren’t being met (sometimes- maybe a lot of times- because the folks supporting them can’t always figure out what those needs are) tend to act in unusual ways.  Dealing with unusual is fine if you are a carer and you have a lot of other people to rely on (not that staff in institutions get all the emotional support they need to do their jobs, but at least at some point their shift comes to an end and they can go home).   If you’re a parent (or parents) then it’s pretty much you.  All the time.  And it’s scary when your kid is freaking out and you don’t know what to do.

I’ve had that experience with my friend who I visit at the institution.  He and I often take drives together.  It’s something we both enjoy.  Sometimes we get out and take a walk or go to the library or buy vegetables at a farm stand.  On occasion, when he gets out of the car he won’t get back in.  At all.  When I’m 15 or 20 miles away from his home and his staff that’s a terrifying experience.  He’s very strong when he’s decided not to do something.  He’s not mean about it- just extremely resistant.

Yesterday, as I was listening to this family’s experiences, I wondered if there’s something to be said for out-of-home placement simply because the people doing the care-taking are not so emotionally involved.   Autistic people are so sensitive to the feelings of people around them, and I wonder if that sensitivity makes it harder to deal with parents who, rightfully, have a huge emotional investment in their child.  

Interestingly, also yesterday, someone in an email group which I belong to sent along a link to this article: “Treating those with autism like [competent and worthy human beings] shouldn’t be a radical notion”  The article addresses, among other things, the issue of movement differences and challenges experienced by many people who are on the autism spectrum and how, often, the inability to organize one’s actions have lead to incorrect assumptions about intelligence and intention.  Thanks to the use of alternative means of communication, there are people who are now able to convey their frustration at being unable to control their bodies and at being misunderstood.  

Another very important topic which is touched on in the article, probably more gently than it needs to be, is the abuse of people who have disabilities.  Abuse has a profound effect on everyone regardless of whether the person has a disability or not.  Sadly, I can’t say that abuse happens any less when people live with their families than it does in an institution.      

So I’m left without any answers (as often seems to be the case) and a lot of thoughts and uncertainties.  I did talk with my friend from the institution about the family and their final decision to institutionalize their son.  My friend doesn’t use any speech at all- in fact, he’s generally silent.  He does have a special sound that he makes which sounds like a cross between clearing his throat and getting his nose stopped up, and as I asked him what he thought (because I always ask him what he thinks) he responded with a lot of his sounds.