"RESTRAINT! RESTRAINT!" OR, "BEFORE POSITIVE APPROACHES"
Before Positive Approaches there existed a world of consequence and punishment. I learned early on that the system smiled on and left alone those people who did not rock the boat. Ah, compliance, a client's best friend. Unfortunately for those people who challenged the status quo there were and I guess still are "things" that can happen. These "things" are prescribed by people who know you and by some people who you may never know. When I first worked in a sheltered workshop I learned about the "things" that can happen if you don't act accordingly.
Steve was a person with autism. Steve had bitten several of the staff people at the workshop. He was also known as a pincher. Steve would get agitated after lunch and start to jump up and down. He would get louder and louder and then he would grab someone. This is when his "plan" was put into effect. Three or four staff members would surround Steve and maneuver him into a chair. It was my job as program specialist to apply a posey restraint so that Steve could not get up. This effectively tied Steve to the chair where he could not hurt himself or others. We would wait for his mother to come and give him some tranquilizers and then we would send him home. We were quite happy with this plan because it was quick and very effective. A person can't do much harm when tied down as long as no one gets near him/her. I felt useful - a vital part of the team: I knew I was keeping people safe.
One day we got word from the new behavior specialist that we could no longer use the restraint. It was getting too hard to get the people that approved these plans to sign off. We were devastated. Didn't they know that this was the only way to keep him safe? We knew that this was the only way that Steve could continue to attend. We had tried "everything" (although I could not recall anything else we had tried). We firmly believed that this was the only solution. We did not brainstorm, think about, or even consider anything that was less restrictive. We had to discharge Steve. His family moved away and I never saw him again.
THE BEHAVIOR MOD SQUAD
Behavior modification is a series of techniques that are applied to people to help them be more "normal." The unfortunate part of behavior mod (as we hip people call it) is that many times the techniques that are applied are not themselves "normal.Ó As an equation, this would appear something like: weird behavior + weird treatment = normal human being. The following story illustrates this.
Bill attended the sheltered workshop. He was small in stature but large in voice and personality. Bill liked to repeat certain phrases and names over and over again. He also liked to ask a lot of questions of his staff and get out of his seat. When Bill was having a really bad day he would hit himself and leave red marks on his arm. Bill loved Kenny Rogers' music, especially the song "Lucille." We wanted Bill to decrease his negative behaviors. We set up a plan that provided Bill a token for every five minutes during which he did not exhibit one of his more annoying behaviors. If he had enough tokens at the end of the day his reward was to listen to the song "Lucille" until his van picked him up.
This plan had a few problems. My office was the designated listening place for this song. This meant that every day that Bill got his reward I also was rewarded by not only getting to hear Kenny Rogers sing, "You picked a fine time to leave me Lucille," but also by getting to hear Bill's very loud voice. There were days when I could not take it, so I sabotaged the token count. I still have a strange aversion to anyone named Lucille. Another downfall was the "language" that was used to encourage Bill to get this reward. We would say, "You want Lucille, don't ya?" or "Sand that piece of wood so you can have Lucille at the end of the day!" or "Bill, you don't have enough tokens. There will be no Lucille today." I am sure the workers in the complex who did not understand behavior mod often wondered what kind of service we provided. An end note to this story is that Bill continued displaying these annoying behaviors. He would have good days and bad days and I am not sure if they were at all related to Lucille or her four hungry children or the crops in the field.
"THESE BOOTS WERE MADE FOR KICKING" OR, "THE TIMES THEY ARE A CHANGIN'"
I made a cosmic switch in the way I think about things long before I noticed that I had changed. Someone pointed out that people seemed happier at my work shop. People with behavior problems seemed calmer and less likely to hurt people. There was a woman named Marilyn who had been in trouble all her life. She had hurt or had attempted to hurt almost every one. I genuinely like Marilyn. She had never hurt me. When someone asked me why, I realized that I had changed somewhere along the way. I came to realize, with the help of Marilyn, that if you give people what they want, they usually won't hurt you. I am not keen on getting hurt. Self-preservation has always been a high priority. Marilyn would wear high heels or boots to work on the days that she was planning to kick someone. When I saw this footwear I began to notice her moods. At just the time that she would be plan planning her attack, I would try and make her laugh. I would spend positive time with her. I would give her some extra coffee. I would let her stop work early. One day when she was trying to kick a staff person I mentioned that she really looked strange trying to run and kick at the same time. She did not want to look strange, and my opinion meant something to her. Her aggressive behavior decreased and she seemed happier. I realized that most of the workshop staff wanted people to be happy, and we realized that different people needed different support. Of course this did not happen overnight, and we missed the boat completely on some people. For the most part we were coming to understand the importance of giving up control and allowing people to express themselves. We were still doing strange "behavior" things to people in the name of rehabilitation, but I confess feeling uneasy every time I tried to "change" someone else.
THERE'S A PLACE FOR US
I had the opportunity to help create a small agency to support people who had been labeled "behaviorally challenging." There were no restrictive procedures at our new place. We began with the person, not with the problem. We created teams of support people who were responsive and caring. We were flexible, nurturing, and kind. Everything was individualized. We saw behavior as communication, and when in doubt, we applied good relationships and consistency. We had fun and celebrated whenever we could. Everyone responded to our philosophy. People with challenging behavior became less challenging when they felt loved and respected. Employees and family members were happy. We were all on a mission to free people from oppression. We were about choice, community, and acceptance.
AND THEN CAME BETTY
When we met Betty she was living in a state hospital. She had been sent to an institution at the age of 11, and she was 21 when we met her. Betty had several diagnoses. What got her in trouble the most was her obsessive talk and aggressive behavior. She was very strong and had seriously hurt herself and others many times. Her reputation was very bad. We liked her. She loved to smoke cigarettes, and this touched the heart of our director, who was an avid smoker herself. When we learned that one of the consequences of being noncompliant in the institution was to have her cigarettes taken away we were moved to action. The other thing that moved us was Betty calling on the phone and begging for our help so she could "get out."
We advocated for her release, and after many tense meetings and letters we were granted the opportunity to work with her. We were ready to welcome her into our positive family. We wanted to nurture her and let her know us personally. We worked hard to plan and create the right kind of support and eventually found a lovely woman for Betty to live with. A week after getting out of the institution Betty wanted to go back. We would meet with her and try and soothe her. She beat up her day staff person. We had meetings to continue to plan positively for her support. She used the phone as a weapon to call us repeatedly and make demands and threats. We searched everywhere for anyone with ideas of how to support this person. She called 911 when things got slow and she wanted someone to talk to. She took an overdose of her mother's medication and then a few months later took an overdose of her own medication. Finally she jumped out of a third-story window and shattered her right ankle. We were getting pressure from every direction to return her to the institution. We would defend her right to be in the community even when she was saying that she wanted to go back. We sacrificed family time, holidays, and vacations. We ended up hating her and fighting amongst ourselves.
Our seemingly impossible task was to continue to believe that Betty belonged and deserved to live in our community. Betty was saying in so many ways that she couldn't take the freedom, choice, and love. What she wanted was boundaries and consequence because that is how she felt safe. We reached a critical point when she beat up the woman that she lived with and the woman quit. Betty ended up in jail and then in the inpatient unit of our local hospital. We found ourselves saying, "Maybe there are people that should live in institutions where they can have structure, consequence, and punishment." We drew our first free breath when the doctors said that they would keep her for 30 days. What a relief to be rid of her. We now could make some decisions. We certainly had tried harder at this than anything before, and now we felt we had failed.
We called our work family together to decide what should happen next. There were those of us who were so burnt out that putting Betty in an institution seemed the only answer. A small contingent saw things another way Ñ they saw a new life where Betty could live in her own apartment and have a different kind of support during the day. We knew that our agency was Betty's only chance to Iive in the community. We decided together to continue to try. We created a crisis team so that everyone could get a break. We worked hard with local law enforcement so that she would have some natural consequences and not just be taken to the hospital. We continued to believe that someday she would be a valued member of our community. We pointed out all of the small improvements that she made. We agreed to weather the next storm and the next and the next.
The truth is that it was a very stormy two years and that bad things continued to happen. The other truth is that good things started to happen, too, and pretty soon the good outweighed the bad. Today, three years later, Betty has become a friend, girlfriend, and neighbor. She lives in her own apartment with her boyfriend. She has not hit anyone in two years She says that she never wants to go back to the state hospital. She can still be annoying but we believe that she will not hurt us because we care for her and she cares for us. Supporting Betty has been really hard work. Making her a part of our community has been incredibly rewarding.
THIS IS THE SONG THAT DOESN'T END
So what do I know about Positive Approaches? I know that it is an ongoing process of learning about the best in people and supporting them through the worst. I know that it is a "we" thing and not a "me" thing - I could never do it alone. I know that it is not a technique or method but more a way of thinking and acting - about trying and trying and trying again and not accepting the unacceptable. I know that Positive Approaches is based on a system of values that begins with the fact that everyone's life has meaning and purpose. I know that whatever we are doing in the name of helping people, it has to be real and respectful. I know that it has something to do with putting myself in a person's shoes and asking, "Would I want people to be doing this to me?"
Looking back at this chronology of stories I am filled with gratitude. I am thankful to those people who have helped me move from punishment, consequence, and pain to a Positive Approach. I am grateful that I never have to hurt anyone again in the name of human service. I look forward to the stories that are yet to come.
The Pennsylvania Journal on Positive Approaches is published by the Pennsylvania Office of Mental Retardation (OMR) Statewide Training Initiative through Temple University, Institute on Disabilities, University Affiliated Program and Contract Consultants, Inc., 105 Old York Road, New Cumberland, PA 17070. For subscription information, please contact Contract Consultants, Inc. at [717] 774 - 5455. Copyright © 1996 OMR/CCI. All rights reserved.
Return To The Home Page of the Journal On Positive Approaches