Episode 2: Life Improvement – Close the Gap, Prevent the Conflict

Jorgé’s* file noted that hitting was a problem. This wasn’t surprising as client files in the intellectual and developmental disabilities (IDD) system are quite often gold mines of information, some of it accurate, some of it not. If you’re lucky, you find insight into who the people with intellectual and developmental disabilities are. But what you always find in people with IDD files is a mother lode of information on who the IDD system thinks the people with IDD are. The gap (or gulf) between people with IDD’s system-given labels and who they really are is a prominent source of conflict between the IDD system and the people it serves.

In Jorgé’s case, the IDD system had pegged him as a nonverbal man with a moderate cognitive disability who hit others frequently for no reason. Gold rush! We already have four clues as to why Jorgé is hitting: 1) Nonverbal is often wrongly assumed to mean non-communicative, and non-person; 2) “Moderate cognitive disability” overlooks that many people with IDD understand more than is apparent, especially when paired with “nonverbal”; 3) People with IDD, just like the rest of us, rarely do anything for no reason; and, 4) If there truly is no discernible reason after exhaustive examination of the situation, something’s been missed (see 3).

It turned out Jorgé was hitting because of AIH³/TPWH. This diagnosis isn’t found in the Physician’s Desk Reference or the Diagnostic and Statistical Manual of Mental Disorders because it’s a malady of the environment, not the person. Jorgé was hitting because anyone in his/her/hir/their place would have. Jorgé had higher-functioning housemates with IDD who could express themselves verbally. They saw staff and agency personnel treating Jorgé as a non-person due to his communication disorder and modeled their behavior toward him accordingly. When Jorgé had enough of their taunting, he’d communicate this to his housemates in the only way the system made available. Jorgé hit direct care workers to communicate how much he needed his life to improve.

Jorgé’s housemates needed staff support to help them relate to Jorgé and find ways to include him in activities such as playing cards and board games since Jorgé was unable to understand the rules. Despite their taunting, Jorgé wanted to forge friendships with them; Jorgé was an outgoing guy who valued others. Jorgé’s behavioral plan, which hadn’t done much to quell his hitting, overlooked these key factors in his life. In doing so, it failed the first step: it was written for a person who hit “for no reason,” not someone who was hitting to communicate distress caused by an inhumane environment.

Staff sat down with Jorgé’s housemates and explained that Jorgé’s inability to understand the rules didn’t prevent them from playing cards and board games with him. Staff explained that Jorgé’s reason for wanting to play games was different from theirs; they wanted to increase their skills and try to win, but Jorgé’s aim was to hang out with them, be friends, and have fun. Staff explained that it was okay to suspend the rules whenever Jorgé was playing.

The idea that people with IDD are intractable pervades the IDD system and creates most of its problems. Jorgé’s housemates began to invite him to join when playing cards and board games. They congratulated him whenever he took a turn or put down a card. They cheered him on with an “Aw, man, I should have seen that!” or “Nice move!” They often congratulated him for winning despite him not making any correct moves. This system had built-in reinforcement; Jorgé’s joy at being included rewarded his housemates, and their friendship rewarded him. Taunting and hitting plummeted.

So, who was Jorgé if not what his file said? Jorgé was a friendly, empathetic guy with a great sense of humor. He loved manual labor and housekeeping and took great pride in a job well done. He knew where EVERYTHING in the house was kept and was quick to help new staff find what they needed. His favorite TV show was The Golden Girls.

The gap between who Jorgé was and who the IDD system thought he was fueled a decades-long conflict in which the system that was supposed to be ensuring Jorgé’s quality of life actually punished him for objecting to inhumane treatment. When we close the gap between IDD system-given labels and who the person with IDD is we gain the opportunity to transform people with IDD’s lives - but the system must be willing to shift its perspective for the change to take hold. Jorgé’s staff closed the gap. Was the IDD system willing to do so as well? No. But that’s another blog post...

Stay dedicated & stay tuned!

*Name has been changed to protect confidentiality