Shevin Consulting
	(315) 443-5179 info@shevin.org	Mayer Shevin, Ph.D. 275 Fellows Avenue Syracuse NY 13210 USA

BARNEY'S HARMONICA

Mayer Shevin, (c)2003

When I give presentations or consult with a human service agency, there is often a moment of recognition when I am introduced.  “Mayer Shevin! I’ve read your work — I love your poetry!”  I smile when I’m told that — invariably, what people mean is that they know and like my poem... the one thing I’ve written which has made a mark on the human service field. 

THE LANGUAGE OF US AND THEM We like things.     They fixate on objects. We try to make friends.     They display attention-seeking behaviors. We take a break.     They display off-task behavior. We stand up for ourselves.     They are non-compliant. We have hobbies.     They self-stim. We choose our friends wisely.     They display poor peer socialization. We persevere.     They perseverate. We love people.     They have dependencies on people. We go for walks.     They run away. We insist.     They tantrum. We change our minds.     They are disoriented and have short attention spans. We are talented.     They have splinter skills. We are human.     They are.......?

I’m pleased with this list.  If once or twice more in my life I write something as clear and as powerful as that single page, I will be content.  But the story behind it is worth telling, because of what it says about the way well meaning professionals working within a rigid system use language to perpetrate oppression.
 
In the late ‘80s, Ron, Paula, Rick and I used to car-pool to our jobs at a large state institution. One day, Rick, the head nurse of the institution’s infirmary, asked the rest of us, “Can any of you think of a reason why one of our residents shouldn’t own a harmonica?”  We all joked for a while, thinking of lots of reasons, silly, surrealistic and obscene, why Rick shouldn’t own a harmonica; then we asked Rick what he was talking about. 

Rick told us about Barney, a 50-year-old man with Down Syndrome, who, because of rapid deterioration due to early onset of Alzheimer’s disease, spent more and more of his time in the infirmary.  Barney had been institutionalized as a young child during the Depression, and had lived there all his life.  The one constant in Barney’s life through all his years at the institution had been his harmonica.  When one would wear out, he would save up the pennies he earned over several months to buy a new one.  Although he hardly spoke, people would come up to him and ask him to play them a tune; the harmonica gave him a “social opening” wherever he went at the institution.  Rick said that as Barney was losing motor skills due to Alzheimer’s, he was becoming more and more depressed.  The only thing that he showed any interest in was his harmonica, but he could no longer play it; he would hold it in his hand, bring it to his mouth, and just hold it there for many minutes at a time. 

On Barney’s most recent visit to the infirmary, Rick had noticed that Barney didn’t have his harmonica.  When Rick asked the aide who accompanied Barney where it was, he was told that the harmonica had gotten lost.  "No problem," thought Rick, and the next day he brought Barney a harmonica from home.  At that point, the director of Barney’s residential unit told Rick that harmonicas were no longer “part of Barney’s program.” 

Here’s why: Barney, like everyone else who lived at the institution, was scheduled to receive six hours of “active treatment” every day.  (This was a minimum programming requirement that the state had to document it was providing in order to keep the Medicaid Title XIX money coming.)  So Barney was scheduled for lessons in self-care – tooth-brushing, dressing, washing – and “cognition” – things like matching pictures and counting coins.   However, in order to do those things, he would have to put down his harmonica… and Barney wasn’t putting down his harmonica.  Not only that, but he would fall to the floor and curl his body around the harmonica if anyone even suggested his letting go of it. 

And so Barney’s harmonica had started “disappearing.”  When he would wake up and find it gone, folks who worked in his unit would tell him, “You must have lost it.  Where did you leave it?”   Everyone (except for Barney) was happy with that arrangement, until Rick screwed things up by continuing to supply Barney with Unprogrammatic Harmonicas whenever he got the chance.  To solve the impasse, an Interdisciplinary Team Meeting was called.

The meeting included about 18 people, but – no surprise – not Barney.  Barney’s unit coordinator was there, and everyone else from “his” team – psychologist, OT, PT, day hab staff, residential staff members, and unit nurse.   A representative from the state's Protection and Advocacy department and I also attended at Rick's invitation.

Terry from P&A told the team that, quite simply, they had no right to deny Barney his harmonica.  All residents of the institution had a right to possessions of their own choosing.   He showed them the paragraph in the state regulations that affirmed that point, and then sat back in his chair as if the issue was settled.  Ah, but things were not to be that simple.  Other members of "Barney's team" argued that there was no reason to claim that Barney had chosen the harmonica, since Rick had simply given it to him; could it be said that someone as confused and dependent as Barney had become was capable of choosing anything?  I spluttered that Barney's lifelong history was pretty good evidence that he liked harmonicas.  "No," said the psychologist, somewhat annoyed at my naïveté, "all we know is that harmonicas are one of the objects that Barney fixates on - it doesn't mean he actually likes them." 

The argument went back and forth; Terry continued to talk about Barney's rights, and the psychologist and other team members described Barney as somebody incapable of exercising those rights.  Rick talked about how depressed Barney seemed at the infirmary, and his interest in giving Barney anything that provided him a little pleasure.  "What makes you think Barney actually enjoys holding the harmonica?" asked the day hab director.  "It's just something he perseverates with."  

At the end of a series of three meetings on this topic, "Barney's team" proposed a plan that Terry reluctantly agreed to: Barney would be taken to a local variety store and told he could pick anything they sold there; the person taking him would make sure that, among other things, he got to see the place where they sold harmonicas.  If Barney picked a harmonica, he could have it; and if he didn't, this would be evidence that he didn't really choose to have harmonicas after all.

Barney died three months later, with no harmonica.  The trip to the variety store had happened, but Barney had not picked anything.  He had just walked through the store without even looking at anything, according to the aide who accompanied him. 

I had wanted to put a harmonica in his coffin, but by the time I heard of his death, he had already been buried a week.  This poem was written as my symbolic harmonica in Barney's coffin.  It's made up of all the things that had been said about him during those three meetings -- meetings which, of course, he didn't attend…