An Absence of Joy© David Pitonyak, Ph.D.
All too often, people with developmental disabilities experience a very limited slice of community life. An entire week may be spent in the group home and on the bus to and from the day program. Hours may be spent performing meaningless and repetitious tasks. An entire day may be wasted sitting in chairs waiting for a shift change or the the next meal.
It can be very illuminating to spend a day "walking in the person's shoes." Do not try to change anything, just observe what he or she does all day (don't let yourself be interrupted by phone calls or paperwork). Ask yourself, is this an interesting life?
You have probably heard it said that people with challenging behaviors need to be segregated from the community because of their behavior. After one day of "walking in the person's shoes" you may find that his or her challenging behaviors occur because there is no meaning to the day. It is important to each and every one of us to have interesting and fun things to do that we decide to do. Does the person have such opportunities, or is the daily routine a daily drudgery that someone else chooses?
Count the number of rooms the person you want to support spends time in. Count the number of ordinary places that the person frequents, places that ordinary people frequent. You may find that the person spends much or all of his or her time in a few rooms. Ask yourself, "Is this an exciting and interesting life? Does the person have interesting things to do and interesting places to go?"
People with developmental disabilities often live in ghettos of reward. Indeed, it is often this poverty of reward, not skills, that separates them from other community members. The presence of a challenging behavior can be a "signal" that the individual does not have an interesting life and has few places to go.
Increasing Community Presence as a Strategy for Making friends
Making new friends is dependent upon meeting new people, so it makes sense to go to places where other people spend their time -- in the community! People with challenging behaviors, just like anyone else, should have opportunities to explore a wide range of activities and community environments. Expanding the number of interesting things that a person does greatly enhances the chances that he/she will have interesting experiences to share.
It is important that people get the support they need to successfully participate in community. For some individuals, being left alone is exactly what's needed when they "go out." They should not be burdened by unwelcome company. Other people need and want company and they should have company. For example, Margaret is frightened of public places. She wants to go Malls, but she is afraid. For Margaret, the company of a supportive friend is a big help. Unfortunately, many providers believe that community integration can be accomplished in large groups (we are inclined to think big when small is best). Consider the "special bowling" events in which twenty-thirty people show up at the bowling alley (usually a Friday afternoon when most community bowlers are working). It is very difficult to be yourself in a large group, particularly when that group is composed of people who already have one strike against them -- the stigma of disability. The most important step you can take in helping a person to form intimate relationships is permit him or her to find intimacy!
Simply having something to look forward to (e.g., a vacation) can be a powerful antidote to challenging behaviors. You do not have to have fun all the time. You simply have to find ways to have fun on a regular basis. Ask yourself, "What is the person looking forward to next?" Is it your idea of fun? How can you help the person to have other things to look forward to?
How can we help the person to experience more power?
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