When I first met Paul we were both in our mid-twenties and working in the same facility: he was doing piece work in a workshop for people who had developmental disabilities, and I was employed as a therapist to provide services to the workers at the site.
Paul was identified as having moderate mental retardation. He had to use a wheelchair for mobility because he had cerebral palsy. Paul's movement was characterized by what is called 'hemiballismus.' What this means is that he would have 'ballistic'-type movements in his extremities that were uncontrolled. So, Paul would be sitting in his chair and suddenly his right arm or right leg would shoot out straight and his body would seem to spasm. These did not last long, but they did occur at a frequency that disrupted his ability to perform activities independently.
Paul was very conscious about this, and over time he became very aware that he could accidentally hurt people if they were standing too close by when his limbs began to spasm. In order to protect others, he developed a habit of tucking his right arm into the seatbelt of his wheelchair. This served as an effective restraint for his right arm's uncontrollable movement, and saved him from significant social embarrassment. As his wheelchair had a one-arm drive mechanism and operated only with the use of his left arm, he saw no need to leave his right arm free where he might accidentally hit a friend or staff member.
I developed a close relationship with Paul and the other members of his house. Outside of work, my wife and I would borrow the agency van and take Paul and his housemates out to restaurants for dinner at the local mall. It was always a wonderful time, and they always appreciated these adventures into the community.
After several years it was determined that Paul could move into a less restrictive environment and that he would benefit from working in a more competitive setting. The nearest program that seemed to meet his needs was approximately 60 miles away, and so arrangements were made for him to move into a new home and to begin his new job.
The going-away party was a tearjerker. Paul was very attached to his housemates, as they were to him. All of his meaningful relationships were at his worksite. I'm not entirely sure why it seemed to be such a good idea for Paul to leave his home and his friends and his work. Sometimes people who have developmental disabilities are easily dismissed, or their feelings are not considered because, well, because they have developmental disabilities. This was an emotional farewell for Paul, and for all of his close friends. We all drank beer, cried, and hugged goodbye.
A couple months went by when I got a phone call from the case manager in charge of Paul's new home. "He just seems depressed, and he won't eat. Can you see him and give us some ideas on how to best set him up so that he can eat?"
Paul never had problems eating before, so this seemed kind of odd to me. Still, I thought that perhaps a visit would cheer him, and if there were some difficulties that the new staff was having with his hemiballismus that I could give them some pointers on how to set him up. We learned to put covers on Paul's drinks, to encourage him to use straws, and to keep knives out of reach. These would be easy pointers to share with the new staff.
When Paul came in, he was slumped over in his wheelchair. He did not smile; in fact, he barely raised his head to make eye contact with me as he was being wheeled in. It was also odd that he was being wheeled in - Paul was fiercely independent and always insisted on pushing his own wheelchair.
I set him up in the cafeteria and brought a tray to him. Paul was clearly depressed - his body posture, his affect, just everything about him was depressed. He couldn't even seem to grip the spoon, and it kept falling out after I placed it in his hand.
As I grabbed Paul's arm to place the spoon in his hand, I felt something different. Very different. His muscle tone seemed dramatically decreased. Normally, Paul's muscles were as springy as a coiled wire, and I would have to duck to get out of the way of his spastic movements and flailing arms. But now there was just nothing there.
"Raise your hands over your head, Paul," I asked. He could barely raise them at all.
I knew that something was desperately wrong. Muscle tone does not just go away like that. And there was no hemiballismus anymore. His arms were just hanging limply at his sides. Even the right one was just lying on the lap tray of his wheelchair - no twitching - no flailing - and no need to be tucked under that seatbelt.
I pulled the case manager aside and she seemed a little impatient. "Can't you just write us a behavioral plan to follow so that we can get him to start doing stuff again? I think he is just feeling sorry for himself, but he will have to get over it and learn that he has to function in his new home."
I guess that when you are developmentally disabled, everyone thinks that things are generally solved by writing behavior plans for you.
I gave her a different answer. "Take Paul to the emergency room at the hospital. Tell them that he needs to see a neurologist. He needs to go." I was not about to try to explain why I was concerned about his muscle tone, and how static brain lesions that cause hemiballismus don't disappear overnight. Actually, I had no idea what could be wrong, but I knew that a neurologist had to figure it out. I shook Paul's hand, and told him it would be ok. I remember how he looked at me, sadly, and simply said, "OK."
I don't know what made the case manager listen to me, but she did. She took Paul to the hospital and the neurologist saw him, and then called me on the phone to hear my concerns.
A few quick cervical x-rays clearly identified the problem: Paul had a C5 spinal cord injury. The nerves that traveled down the spinal column and carried all those spastic impulses to his muscles had been severed and short-circuited.
Still, there was a larger question to be answered - how did Paul get a spinal cord injury??
Turns out that on the very first night he was at the new home, one of the attendants was assisting him with getting from his wheelchair to his bed. Paul was not an easy person to transfer, and you always had to be prepared for his spasms if they came while you were lifting him from one surface to another.
Apparently, the attendant was not careful enough, and Paul had a muscle spasm during the transfer and was unceremoniously dropped on his head. Of course this wasn't documented because this person wanted to maintain their job. Besides, a developmentally disabled person would never tell anyway.
As the truth came to light, the attendant was fired, and Paul was given a cervical collar. The fracture was well on its way to being healed - it was nearly two months old by this time. Paul didn't qualify for inpatient rehabilitation because he was developmentally disabled. On the intake application they didn't ask if he could hold a spoon anymore, or if he use to enjoy Friday nights on the town with his friends at the restaurant or if he always worried desperately that his right arm was one day going to deliver a knockout punch to someone. Instead, they just saw that he was moderately mentally retarded and so they made a bunch of hasty conclusions about his relative value and worth as a human being. Rehabilitation is generally only offered to people who have 'potential' for independence - and as Paul already required 24 hour care, no one saw the need.
Moving away to a new job and more independence was supposed to be Paul's lucky break. Instead he was dropped on his head and broke his neck, which was not lucky.
Paul never went back to his friends, or his old job. He also never had to worry about delivering a knockout punch anymore. His right arm still rests quietly on his laptray, as still and unmoving and impotent as the bureaucracy that was set up to attend to his needs.