Eerie Group is A-FACTPeer Visitation Q & A Forum
VOLUME 3 NO. 3
June, 2002
Amputee Coalition of America - National Limb Loss Information Center
900 E. Hill Avenue, Suite 205, Knoxville, TN 37915 · 888-AMP-KNOW (267-5669)
Richard Mooney, editor; e-mail: matlmgr@jps.net - Becky Bruce, coordinator; e-mail: rbruce@amputee-coalition.org
. . . Dedicated to Enhancing Support Group Leadership Skills
Peer Visitation Corner
Eerie Group is A-FACT
Peer Visitation Q & A Forum
by Kathy Spozio
Erie Group is A-FACT
April's issue of the Communicator, published an article titled "Gaining Respect and Recognition for your Peer Visitation Program." (You can find it at http://www.amputee-coalition.org/communicator/vol3no2pg3.html). It presented a concept that suggests there is more than one approach to developing a successful peer visitation program and featured the Central California Amputee Education Support Group (CCAESG). Under the direction of Liz Zemke, RN, ACA Regional Representative (Region K) and below knee amputee, this group and visitation program became both well established and respected over the years. In contrast, this month's article, featuring the Amputees & Families Actively Caring Together (A-FACT) group, will demonstrate what can be done to grow a start-up group into a noteworthy program in less than a year.
In the spring and early summer of 2001, a unique birthing process was underway at the Hamot Health Foundation in Erie, Pennsylvania, albeit, not in the maternity ward. Like many newborns, Hamot's new arrival had been planned for a long while, even before its conception. As a matter of fact, James Ray, Pharm.D., clinical pharmacist in pain and palliative care at the health center, had been envisioning ways to support amputees as part of a comprehensive program that would address issues facing amputees on a larger scale: pre, during, and post amputation, particularly in the area relative to pain management. Part of Dr. Ray's vision included the creation of what the medical center calls "Order Sets," i.e., specific guidelines to assist medical professionals in helping to ensure their patients' reception of optimal outcomes of amputation surgery. As part of this in-depth plan, the Amputees & Families Actively Caring Together support group was born.
Organizing and spearheading the efforts of the group is pain management nurse, Donna Rapheal. She has shared Dr. Ray's vision from the get-go and has been the real impetus behind the development and nurturing of the group thus far.
In most cases, a peer visitation program grows from within an already established support group; however, the Erie group wasn't traditional in this sense. The beginning of their support group and peer visitation program happened on the same day.let's call it the birth of twins! It was August 11, 2001, when Gary Torick and I presented a peer visitation training to nine amputees and eight healthcare professionals. The local television station was there to interview attendees and presenters and, later that evening, Gary and I saw ourselves on the evening news. The media did an excellent job promoting both the local support group and the ACA; they even flashed the ACA's contact number on the TV screen. Rapheal, the group's facilitator, believes that the coverage has helped a lot with the growth of the group that now numbers 23, ranging in age from 21 to 85.
Following its August inception, A-FACT has met regularly on the fourth Monday of each month. The diverse programs have included both social gatherings and educational sessions, including speakers on diabetes, prosthetic hygiene, a Christmas party, and two social dinners at local restaurants. It was at one of these dinners that things turned really "social." On a particular night in October, 2001, the news media were present to provide highlights for the evening newscast. One of the reporters got wind of the recent engagement, just a few hours previous to the meeting, of one of the support group's members and zoomed in on the couple and their story. It was by watching the evening news that the couple's families learned of their engagement. Now, that's a novel way to get publicity, for both the support group and the couple!
The Hamot group has also had some out-of-the-ordinary experiences in their short tenure together. Donna Rapheal, along with two of the group's members, an above-knee and a below-knee amputee, was invited to teach six sections of a health class at the local high school. They were warmly received and discussed issues concerning diabetes prevention, cardiovascular disease, and cancer, among other amputee related topics. One of the participants, who was a teen when she lost her leg to cancer, spoke frankly concerning how kids in school were cruel and made fun of her. The hope of the all the presenters, said Rapheal, is that the young adults will realize the importance of respecting people with disabilities. "Hopefully, the message we left the students with," said Rapheal, "is that people who are different can be found in all walks of life." Another out-of-the-ordinary happening will occur in September, 2002, when a support group member, Ron Holman, cyclist and double above-knee amputee, will hand-pedal from Erie to Pittsburgh to raise disability awareness. The bike ride, to be sponsored by Healthsouth and supported by Hamot's Amputees & Families Actively Caring Together, will raise money for a scholarship fund for students with disabilities.
Although the group is still working on the idea of a newsletter, the Hamot foundation and the support group facilitator have just put the finishing touches on a publication called the "Amputation Education Handbook." This 85 pages-plus document covers a wide gamut of topics and information intended for pre and post amputees. A sampling of the table of contents includes such topics as: What to Expect During your Stay, Pain Management, Physical Therapy, Occupational Therapy, After Discharge (skin care, ace wrapping, depression, signs of infection, home care, peer visitation network, support group, ACA, and more), Nutrition, Web Sites, Prosthetists, and Definitions (of common prosthetic terminology).
Rapheal credits the assistance of the ACA and former regional representative Gary Torick and the Pittsburgh based support group Unlimbited for help in gathering resources for a packet that is supplied to amputees who receive peer visits. Contents of the A-FACT packet includes a copy of First Step and inMotion magazines, a welcome letter from Rapheal, information on the support group and peer visitation, applications for a Pennsylvania handicap parking placard or license plate, application for the city of Erie transportation assistance service for people with disabilities, glossary of prosthetic definitions, a copy of You're Not Alone, and a listing of local prosthetists.
It appears that the action has only just begun in this Great Lake locale and plans for the future include a pediatric spin off of this adult group. With a Shriners Hospital located in the same town, Rapheal has already opened dialogue with the administration in hopes of hosting a joint meeting and including both kids and parents from the Shriners' facility.
As you can see, there's a lot happening in the Erie, PA, amputee community. Thanks to Donna Rapheal, the Hamot administration, and the active amputees of this group, progress has been fast and furious in a very short period of time-and that's A-FACT!
Peer Visitation Q and A Forum
Dear Kathy,
At a recent support group meeting, one of the amputee members shared with the group that they were feeling quite depressed. They said they felt there was no reason to "go on" and that life was not worth living. They also indicated they had a plan for taking their life. This left me and the other members with an uncomfortable and somewhat helpless feeling. What is the role of a support group leader given this type of situation? I felt very worried and even somewhat responsible for what this member might do.
Michelle
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Dear Michelle,
I can certainly understand your feeling of uncertainty and sense of accountability. Facing an issue such as this, i.e., someone either alluding to or threatening to take his or her life, is serious. This is a real dilemma and a sensitive question to address. I would also like to say that this type of situation could arise not only in a support group setting, but during a peer visit as well. For that reason, I will attempt to provide guidance for both scenarios.
Let me start by referencing and reprinting the ACA's peer visitation training material, which presents a section on suicide. While this material is written specifically for situations that may occur during peer visitation, it also has application for other related functions, such as support group meetings.
(From the Peer Visitation Training Manual:)
Suicide is not a subject people enjoy discussing. However, when people have symptoms of severe depression, it is important to learn ways to recognize suicidal ideation (i.e., the forming of ideas) so precautionary measures can be taken if needed.
Suicide is a complex behavior usually caused by a combination of factors. Research shows that almost all people who kill themselves have a diagnosable mental or substance abuse disorder or both, and that the majority has depressive illness. Studies indicate that the most promising way to prevent suicide and suicidal behavior is through the early recognition and treatment of depression and other psychiatric illnesses.
Two conditions can be associated with suicidal ideation.It is not true that if a person talks about suicide, they will not attempt it. Seriously suicidal people make such comments for a variety of reasons-it is extremely important to take these remarks seriously and refer that person for a mental health evaluation and treatment. A person in crisis may not be aware that they are in need of help or be able to seek it on their own. Unless you are a trained professional, it is not your role to conduct any type of crisis intervention.
So, you might still be wondering; what can you do in real life, whether you are conducting a peer visit or a support group meeting. While this will vary somewhat, dependent on which situation you find yourself in, let's look at both to see how we could react if such an emergency arose.
To get some ideas that may be helpful, I consulted a trained professional, Lisa Paffrath, MS, CACD (Masters of Social Work, Certified Addictions Counselor Diplomate). Lisa pointed out, "Depression is the problem, suicidal thoughts is the symptom;" and someone untrained should "never attempt to counsel a person who manifests suicidal tendencies." She does suggest, however, that there is a difference between offering counseling and offering to "be there" for someone in crisis until help is found. In the case of an emergency, all counties in the United States have mental health personnel. These professionals are trained to assess an individual to determine their need for care and can be reached by dialing 911. This kind of help could be appropriate in either the peer visit or support group setting if no other responsible parties are present and if the person is threatening to harm themselves or others. One caveat here; never remain in any situation where you feel you may be harmed.
During a peer visit, however, we are usually not alone with the amputee, in which case other responsible parties should be made aware of the situation. For instance, if the visit were in a hospital setting, it would be appropriate to pass information like this to the nurse or administrative person in charge. If the visit is at home and other family members are present, the information should be shared with them.
Lisa further suggests that as the facilitator of a support group, it would be wise to address this issue in a general sense to the entire group just like you would present other "rules" of procedure. For instance, you could say that any personal issues discussed in the group setting, health-related or otherwise, are considered confidential and will be held in confidence by all members. However, the exception to this would be if someone indicates they were going to harm themselves or others. In this case, members should be made aware that professionals would be contacted.
Please remember, there is only so much we can do in either setting. And while we should never attempt to counsel anyone manifesting suicidal tendencies, doing nothing may not be the best solution when someone threatens to harm himself, herself, or another.
If other support group leaders or peer visitation coordinators have information, advice and/or questions to share, please forward them by email directly to Kathy Spozio at mermaid@usachoice.net.
Leadership Skills
Working With Difficult People
by Dick Mooney
The world must be full of "difficult" people. If you don't believe it, do an Internet search for "handling difficult people" and you will find literally hundreds of Web sites--most of them advertising books and workshops for sale. This must be a universal problem because a lot of people seem to be making good money from telling others how to deal with it. Unfortunately, as a support group leader, dealing with these people won't provide you with any income, but you will still have them in your groups (or already do!) and you must find a way to deal with them.
Who are these difficult people? Lee Nattress, in the support group leaders' workshop he conducted at the Kansas City annual meeting, described them as those who are overly talkative, highly argumentative, ramblers, obstinate, gripers and whiners, definitely wrong, off the subject, silent, and those who insist on conducting side conversations. Sound familiar? How many of these folks do you encounter in your groups? God forbid, there may even be some on your board!
If working with these people were easy, there wouldn't be a whole industry devoted to teaching "dealing skills" to managers and leaders. Nevertheless, people like this disrupt your meetings, they stand in your way of accomplishing what you think is best for the group, and you have to try to do something constructive about it. I hope there are some ideas in this article that will help. First, though, let's look at some generic issues surrounding this problem. Thinking about the "difficult people" problem in these ways may provide you with some insights into solutions that you haven't thought of before and some that may work well for you.
The Control Issue - The first and most important thing you must understand is that you have no control over difficult people. They are the only ones who control their behavior. You only have control over your own behavior. So the trick is for you to behave toward them in such a way that will encourage them to modify their behavior and become "good citizens." Understanding this will lead you to the conclusions that you will not always be successful and that you will have to deal with your own frustration in those cases.
The Conflict Issue - One way to look at this is that working successfully with difficult people is essentially an exercise in conflict management. The behaviors difficult people exhibit may be in conflict with the behaviors you would like them to exhibit, or think they should exhibit. They may be in conflict with the smooth conduct of your members' and board meetings, and they may be in conflict with your ideas and the actions you feel you must take as leader to manage your group's affairs effectively. If these conflicts didn't exist, you would not label these people "difficult."
The Power Issue - Working successfully with difficult people is also an exercise in managing your leadership power. As leader, you are the one who has legitimate power. You have been formally elected or appointed to be responsible for the effective management of the group and, presumably, you have the commensurate authority (i.e., "power") to do all those things necessary to fulfill your responsibility. You exercise your power in many, often subtle, ways. You lead group meetings, you chair board meetings, and you take the lead in planning and implementing the changes and improvements necessary to assure that the group will survive and prosper. The behaviors of difficult people could be seen as attempts to wrest some of your power away from you. Even if that may not be their conscious motive, that is the effect. When difficult people ramble on and on or change the subject during group discussions, they are seizing power to lead the meeting that has not been legitimately vested in them. The same is true in board meetings. When other board members become argumentative or obstinate, they may be trying to challenge your power as leader.
Another dimension to the power issue is that rank-and file group members expect you to exercise your power as leader to deal effectively with people whose behavior is disrupting and spoiling their enjoyment of meetings. If you ignore these situations, you may do so at the cost of the respect your good citizens have for you as their leader.
The Negotiation Issue - Negotiation is a process of reconciling differences and conflicts between two or more parties. In the commercial world, the differences often concern price; one party wanting to increase it and one party wanting it reduced. In the support group leader world, the differences often involve organizational plans, policies, procedures, or control issues. As leader, there are conditions you think should exist to assure that the group's business and meetings will run smoothly. You see your position as "right," but others, the "difficult" ones, probably are equally enthusiastic about the rightness of their positions. The key to reconciling these differences successfully is to find some middle ground where both parties can feel "right," often called a win-win situation.
The Ego Issue - "Ego involvement" always exists and should be recognized for what it is. If I want something that the group doesn't truly need, I am ego involved. If I see interruptions or side conversations at meetings as problems that adversely affect me rather than the group, I am ego involved. It is impossible not to be ego involved to some extent. But it is possible--essential, in fact--not to allow that involvement to drive our behavior and blind us to solutions that are best for the group.
Some Strategies
Due to the magnitude and complexity of this problem, it's completely impossible for any article, book, or workshop to provide "formula" approaches that will work with all difficult people in all situations. Therefore, in this section I prefer to talk about "strategies."
Use the Right Size Tool - When people interrupt the meeting with endless comments, side discussions, off-subject statements, or the like, it's best to try the most benign responses first, only escalating to more positive intervention if the gentle approach isn't effective. In fact, your first response might not be verbal at all. For example, I have been successful in squelching people who interrupt by simply making a "stop" or "time" signal at them with my hands. I have also been able to control people who are having a side conversation by simply walking to where they are seated and standing there a while. Remember, if you always jump in with your sharpest tool first you may begin to look like a bully.
Smile - Even the sharpest comment you can make to someone who is seriously disrupting a meeting can be softened with a smile. Remember, your goal is to encourage a change in their behavior, not chew them out.
Be Assertive - The classic "assertive" technique involves couching messages in "I" terms rather than "you" terms, and in making clear requests. Saying, "You are disrupting the meeting" can be seen as accusatory and invites defense and argument. Saying, "I feel _____ when you do that" labels the problem as yours and is hard for the other person to take offense or argue with. If the "I" message defines the problem, the clear request tells what you want the other person to do about it. Statements such as, "I would like you to wait for your turn to speak" or "Next time, I would like you to respect the views of the others by not interrupting them" leave no doubt about what you are requesting the other person to do.
Dealing With the Aggressor - Aggressive people are inclined to hate wimps. Therefore, ignoring or retreating from these people is probably not a good idea. The "peace at any cost" principle usually has enormous hidden, downstream costs. It is best to confront the issue involved head on. Be direct. Don't beat around the bush. Stand up for yourself. But being aggressive in return never works. Use the assertive technique instead.
Dealing With the "Know It All" - You have probably encountered those who know everything and don't hesitate to tell everyone else about it. These characters either do know a lot (in which case you might use them as resources or share the spotlight with them from time to time), only think they know a lot but who are usually wrong (in which case you can tell them you appreciate their opinion but don't agree with it), or who dominate the discussion (in which case you can make a clear request for them to allow others to have their say). Whatever you do, avoid ego involvement and arguing your point. You will only waste a lot of the group's time and probably won't change their opinion that they are still "right."
Avoid Labeling People - When someone interrupts frequently and you label them as "an interrupter," even unconsciously, you will always look for that behavior from them and each time you see it your opinion of them will be reinforced. These kinds of labels tend to be self-fulfilling. Worse, you probably won't notice when they don't interrupt.
Reinforce Desired Behavior - When trying to motivate people to behave correctly, it's a proven fact that criticizing undesired behavior isn't nearly as effective as praising desired behavior. I used to tell my subordinate managers, "Catch your people doing something right and praise them for it. Pretty soon, they will be fighting to do only right things." To use a previous example, if there is someone in your group who interrupts frequently, try to catch them after a meeting when they have not interrupted and say something reinforcing like, "I appreciate that you gave me more time to explain the topic tonight before commenting on the material. That certainly made it easier for me to present the subject in its entirety."
Try Humor - Sometimes humor, provided that it isn't at the other person's expense, is an effective way to deal with difficult behaviors. Once, I told a meeting participant who was criticizing me mercilessly, "You can continue talking to me that way but I'll still be nice to you (smile)." People who espouse extreme opinions endlessly might be told, "You really have to learn not to mince your words (smile)." Humor directed at oneself is seldom dangerous, as in "I don't agree with you but, then, what do I know (smile)?" Use humor carefully. It's easy for humor to masquerade as sarcasm or to diminish the other person. And never forget to smile. It helps to identify your intent to be humorous.
Be Flexible - If the goal of the meeting is to talk about the peer visitation program but everyone seems to want to discuss phantom pain, sometimes it's wiser to allow the agenda switch than label everyone as "difficult" and insist on pulling them back to the "correct" subject.
Continue Discussions Later - Rather than trying to squelch persistent off-the-subject comments, especially when nothing you say seems to work, you can always say, "I want to understand your viewpoint better, so let's get together after the meeting and talk about it then."
Show Respect - The essential common thread in all strategies for dealing with difficult people must be always to be respectful. You can't expect others to respect you if you are disrespectful to them. They may be wrong, they may be problems, they may be disruptive, but they are still human beings and participants in your group. Responses that insult or diminish them will seldom be effective and will ultimately reflect badly on you.
No article such as this would be complete without a few examples from an experienced support group leader of the kinds of strategies that have worked for them . Dee Malchow, a new Communicator correspondent beginning with the April issue and a long-time support group leader, offers the following:
Side Conversations - I raise my hand (like "Stop!") and say, " Oh, I want to hear what you both have to say. Let's let Barbara finish and then we'll check in with you two." Nobody gets insulted this way and it seems to minimize the number of side conversations.
Extensive Talkers - I will interrupt with a comment like, "Wow, it sounds like you've got a lot of legitimate issues going on (then I look at the clock or my watch) but I really want to make sure everyone gets a chance to share. So we need to move on to Ben."
Whiners - Praise sometimes works with whiners. We had the "King of Whiners" in our group and I took it as a challenge to find some positive thing to acknowledge about him at each meeting. The first time, I found that he had mastered the system of getting a ride to meetings from public assistance. I'd never heard of anyone accomplishing that before so I gave him great praise for it. After I had done this kind of thing at several meetings he started coming in with positive reports; "I stood yesterday;" "A neighbor brought my kitty for a visit;" "My back pain is improving." He never did turn into what I'd call an optimist, but at least his whining greatly diminished.
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Finally, have patience and be of good cheer. Dealing successfully with difficult people is really hard. If at first you don't succeed, keep trying. Your members will understand what you're attempting to do and will admire you for it. Remember that the best home-run hitters in baseball are also the ones who strike out the most--but they stay in the game. They keep trying.
The difficult people in your life will not go away. You will win some and lose some. But if you always keep in mind that 1) difficult people are difficult because they choose to be difficult, 2) whatever you do, you cannot control their choices--you can only influence them, and 3) if you don't throw in the towel but keep trying, you will at least be able to sleep well knowing that you've done the best you could.
For Your Members
Selecting A Wheelchair - Part II
by LeRoy Wm. Nattress, Jr., Ph.D.
(This is the second article that presents different aspects of "Selecting a Wheelchair.")
The purpose of a wheelchair is to increase mobility-allowing a person to move from place to place with greater ease-and to improve quality of life, permitting a person to be more independent. In Part I of this series, we indicated that, after determining how someone will use a wheelchair, the process of selecting a wheelchair begins with choosing a supplier. With that understanding, let us take a step back and consider some of the questions you might ask when determining how you or someone close to you will use a wheelchair. Here are some obvious questions; they should help you formulate other questions based on your unique circumstances.
These and other questions will determine which of the following components and configurations will be most appropriate for the prospective wheelchair user. Therefore, while the physician's prescription may read "One manual wheelchair for Patient X," buying a wheelchair off the showroom floor is likely to be a mistake, leading to disappointment and dissatisfaction. That's why selecting the supplier is so important.
The choices to be made about each wheelchair include:
For further information about selecting a wheelchair, access the following Web sites:
http://www.abledata.com (Search for "Product Type." Look for "Wheeled Mobility.")
http://www.spinlife.com
or refer to:
Choosing a Wheelchair: A Guide for Optimal Independence, © 1998, by Gary Karp, published by O'Reilly & Associates, Inc., 101 Morris Street, Sebastopol, CA 95472
This is an edited version of an article submitted to the Partnership to Preserve Independent Living for Seniors and Persons with Disabilities on July 3, 2000, for publication in the Summer Issue (Volume 9, Number 1) of
Meeting the Challenge Quarterly.
Dr. Nattress is Senior Program Director, Community Health Systems, Inc., and Executive Director, The Amputee Information Exchange, Inc.
Leadership Skills
A Winning Strategy for Getting Results
by Dick Mooney
I have become so used to hearing support group leaders complain, "We can't get people to come to our meetings," "We can't get anyone to volunteer to help," "We can't get enough peer visitors," you can imagine my surprise at picking up Dale Berry's book at the Kansas City annual meeting and discovering that there's no such word as can't.
That's one of the book's subtitles; There's No Such Word as Can't. The other subtitle is A winning strategy for achieving success and delivering bottom-line results. Now that's something I can really buy into!
Results! What a novel concept! You've all been exposed to my philosophical diatribes in this publication about there being too many folks these days who try to sell us on the idea that it's enough to try. It doesn't matter that they don't succeed. They tried soooo hard! Well, that's hogwash, as my grandmother used to say. Trying doesn't count. The only thing that counts is results! And that's the title of Dale Berry's book; Results.
For those who didn't pick up a copy of Dale's book and read it as I did, I want to tell you in this article about his "Results Model." Believe me, it's a powerful model! If followed, it can take the word "can't" out of our vocabulary. Wouldn't that be something?
Dale Berry is a certified prosthetist with over 20 years experience in bringing results-oriented prosthetic solutions to amputees around the world. But Dale is also "The Results Coach." In that role, he is a trainer and motivational speaker who has developed a far flung reputation for teaching scores of organizations and individuals about his winning strategies for getting results.
Here's Dale's model:
R = Responsible to get the job done
E = Expectations are clear and concise
S = Solutions to manage challenges
U = Understand the job
L = Learn what you need to know
T = Tenacity to never give up
S = Simplify your strategy
Responsible to get the job done
As leaders of our groups, we have the ultimate responsibility for everything. Sure, we expect some of our board members or volunteers to be responsible for their assigned areas--for taking care of "their" parts of our group's program. But we still have overall responsibility for the health of our group. Like the sign in Harry Truman's office said, the buck stops with us.
What does it mean to be responsible? A responsible person is the primary agent, cause, or motive for taking charge in any situation. As the word suggests, we generate the ability to make an appropriate response to solve problems, bring about change, initiate program improvements, and the like--in short, to make things happen. A responsible person is "liable" in a moral way for everything that happens within their area of responsibility--in our case, the whole group. Responsible people take control.
Being responsible means that we are also personally accountable. Being accountable is something like "accepting responsibility." Being accountable is the same as being answerable. Accepting responsibility and being accountable means that we don't blame others or bad luck when things go wrong or when things are not the way they ought to be. Being accountable demands that we seize the initiative to right wrongs, solve problems, and make the needful things happen.
Perhaps it would be useful to look at the issue of responsibility in terms of an individual who must respond to an individual problem. No one else is involved to share responsibility. The ball is clearly in their court, so to speak. A good example is a person who suffers limb loss. In fact, it's the example Dale Berry uses in his book. We are the ones who are suddenly without a limb and we are the ones who must do something about it and, indeed, the only ones who can do anything about it.. We are clearly responsible. The principle difference in this example and the broader support group leader example is that, in most support groups, there are others who it's convenient and maybe even comfortable to blame for failing to accept their responsibility. But make no mistake about it; if we are the leader, we are responsible.
One of the elements of being responsible is setting realistic goals (see the goal setting article in the February, 2002, Communicator) and setting timetables for reaching those goals. As Berry points out, the difference between dreams and goals is that a goal is a dream with a deadline. Very few good things happen if we simply wait around for them to happen. If we have a splinter and we just wait for it to go away it's much more likely to fester and get worse. The same is true of support group problems. They don't usually go away by themselves. If left unattended, they get worse. Instead, the leader must take responsibility for making them go away.
Responsibility is often confused with the need to do the work. Actually, there is very little connection. Take the CEO of ACA, for example. The CEO must be responsible for the entire ACA program, but does that mean she does all the work? Of course not. The CEO "delegates" part of her responsibility to subordinates. The CEO holds them accountable for doing the work effectively but the CEO's overall responsibility is not diminished by having delegated part of it to subordinates. It's an intriguing concept, but when we delegate part of our responsibility to others, we still have it. To use a computer example, it's like copying our responsibility and pasting it somewhere else, not like deleting our responsibility and pasting it somewhere else.
Berry's questions about responsibility:
Expectations are clear and concise
Expectations are not the same as goals or dreams. Expectations are belief mechanisms that turn a goal into reality. Expectations are positive, focused visions of what we believe is possible and within our grasp. To expect something is to know in our heart and soul that we can achieve it. Expectations are the foundation for strong belief, both in ourselves and in our goal.
How do we turn a goal into an expectation? We must believe our goal is attainable. It doesn't matter what others think. We must believe we can do it. We must focus on our confidence, not on our doubts.
High expectations are belief mechanisms that support a goal and give it strength. High expectations lead to confidence. Low expectations undermine a goal and make hope for attainment fade away. Low expectations lead to doubts.
Berry emphasizes that the "E" in RESULTS does not stand for "Excuses!" Excuses are not part of solving a problem. Excuses undermine high expectations. In Berry's words, "There are no acceptable excuses!"
Berry's questions about expectations:
Solutions to manage challenges
Results start to happen when we shift our focus from problems to solutions. Focusing on the problem invites negativity, endless discussion of what is wrong, and whose fault it is. Certainly, one needs to define a problem before trying to solve it. In fact, it's been said that a problem well defined is half solved. But dwelling on the problem gets us stuck in the mud of inactivity. We need to get on with it and find out what will fix the problem.
Berry is an advocate of "thinking outside the box." Getting outside our box will extend the boundaries of our perceptions and will lead us to an unlimited number of potential solutions. Failure to do this traps us into looking at possibilities in limited ways. We become set in those ways and fail to see that, in reality, there may be many new and creative solutions. We tend to be comfortable in our box but once we learn to escape it, we may find it's really fun.
One way to get out of the box is to ask a lot of questions. Has this been done before? How can we do this differently? Can we modify old solutions and make them fresh and more powerful? What do I need to learn? With whom do I need to consult? Questions create an environment in which every idea, both good and bad, has value because they can be the source of the creative spark we are looking for.
I have found that good people to question are ones that have no connection to the problem. Sure, I can get a lot of unrealistic ideas that way, but because the people I talk to don't have the negative bias that others who have struggled with the problem for a long time have, I am also likely to get fresh ideas I would have otherwise never thought of.
Berry's questions about solutions:
Understand the job
Do we thoroughly and precisely understand the job ahead of us? Do we have a clear and concise understanding of what it takes to be an effective support group leader? Do we understand the whole job? According to Berry, there are four advantages of understanding all aspects of the job:
Berry's questions about understanding the job:
Learn what you need to know
Berry makes an interesting observation when he points out that children are naturally curious and inquisitive, and ask endless questions about the world around them. But sometime in people's teens this quest for learning seems to shift to a desire to be right. Asking questions and admitting that they don't know begins to be seen as a sign of weakness. The point, of course, is that being afraid of being seen as ignorant, guessing what the answer is instead of finding out what the answer really is, and always retreating to what we already know, traps us in our old experiences and keeps us from accepting new challenges.
Is the reason we are often reluctant to accept new challenges really a fear of failing or is it our fear that we will have to admit we don't know enough and will have to learn new concepts and techniques?
Berry says he carries around two invisible buckets. One is labeled "stuff I know that I know" and the other is labeled "stuff I know that I don't know." He readily admits that his "don't know" bucket is infinitely larger than the "know" bucket, but he says that his challenge is to change that by continually removing stuff from his "don't know" bucket and adding it to his "know" bucket. That process is called learning.
Further, Berry points out that learning new attitudes is even more important than learning new "things." The reason is that fresh, healthy attitudes provide more leverage than "things." The right attitudes clarify our thinking and open up many new horizons. New attitudes beget new perceptions. New perceptions, in turn, enable us continually to better see, learn, and understand new things.
Berry's questions about learning what you need to know:
Tenacity to never give up
One of the reasons we fail to achieve results is that we've learned to give up too quickly. Yes, learned. Giving up can be seen as a learned response to the frustrations and difficulties one can experience in the process of achieving difficult goals. But if giving up can be learned, so can never giving up.
Berry points out that two fundamentals in learning never to give up are to have a purpose, and to believe in the goal.
Having a purpose centers our energy and maintains our enthusiasm when the going gets tough. Having a purpose is like wanting something (i.e., a result) and understanding firmly why we want it. I once heard "talent" defined as wanting something strongly enough to work for it. Purpose gives reason to efforts.
Belief in our goal keeps us stay focused, maintains our ability to be positive, reinforces our commitment, and creates the drive to be tenacious. Berry advocates visualization as a way to keep plugging. Have a vision of success, have a clear picture of reaching the goal, and imagine the warm feeling reaching the goal will ultimately provide.
Berry's questions about being tenacious:
Simplify your strategy
Funk and Wagnall's definition of "strategy" is a military one. To paraphrase, "strategy" has to do with prosecuting a war on a broad scale, as distinguished from "tactics," again paraphrasing, which has to do with handling troops in the presence of the enemy or the attainment of immediate objectives. It seems to be clear that a strategy concerns broad objectives and a tactic concerns immediate objectives-how to fight the war versus where to drop the bomb, so to speak.
If we separate the notions of strategy and tactics, it's easier for us to understand the final point in Berry's book. When we focus on the difficulties, the details, and the complications involved in reaching our goals, in a sense, we are focusing on tactical issues. When we do this, we can easily lose sight of the fact that all we need to do to get there is just put one foot in front of the other. That's a simple strategy. This is not to say that details and complications aren't important for us to understand. It's just that it's important not to focus on them and get bogged down.
What we need to do is develop simple strategies for achieving the results we desire. About the simplest strategy I can think of is Nike's "Just Do It!" Doing it is what it's all about, and it's the bottom line of Berry's message. When we feel bogged down by complications or difficulties, we need to ask, "What do I need to do to get the results I want?" Once I've defined what I need to do, I can do it. What I need to do becomes my simplified strategy.
Change is an important ingredient of Berry's model. He cautions us that successfully achieving the results we want frequently requires us to change our strategy. Therefore, it can also be useful to ask, "What do I need to do differently to get the results I want?" As long as we keep doing things the way we've always done them we will keep getting the results we've always gotten--and those probably aren't the results we want.
Berry's questions about simplified strategy:
I urge you to visit Dale Berry's Webpage at http://www.resultscoach.org/index.html , order a copy of his book, and get on the road to achieving your results!
Dear Dee
by Dee Malchow
The Communicator has established this regular feature to help you deal with the common, and sometimes uncommon, questions you may be asked as a support group leader. We hope that Dee's expert and insightful responses to the "model" question each issue will contain will enlarge your repertoire of tools for satisfying your members' informational and support needs.
. . . . Editor
Dear Dee,
I don't understand it. Ever since this foot amputation from my diabetes, several of my good friends don't come around anymore. They used to come to my apartment at least once a week and we would play poker. It's only my foot that's gone. I can still deal cards and play. What happened?
Smilin' Anyway
--------
Dear Smilin'.
First of all, I'm glad to see you're still smiling. There's a lot to smile about in life, including this amputation project, even if others don't know how to deal with it.
The problem is your friends have to deal with your foot loss, just like you do. You, of course, can't escape it, even when you would like to. They can just stay away.
Why do they do that? They seemed like "good friends". The answer can be as varied as the people. Some people (probably most) just don't know what to say or how to act around us with our revised body. They are used to all the parts being there, just like theirs. Now there's a gap. As we roll through our heads thoughts of, "am I still the same person I used to be ?" they are doing the same thing. We're not sure if this outside change has actually made us into someone different than we used to be. Neither are they.
Sometimes, just our upbeat attitude with others will spread the word that our sense of humor is still intact and we don't get overly sensitive about the whole thing. Sometimes. with these folks, it takes our initiative to give them a call to let them know we're doing okay and looking forward to seeing them again. People are often afraid that they will slip and say something like, "My new truck cost me an arm and a leg." If we laugh and say, "Whoa, that sounds like a bit much!" they know that they can relax and chat with us like old times.
Maybe people saw or heard about a legitimate "down time" we had before or after surgery. Maybe they once saw or knew a person with an amputation who seemed angry or depressed. If they think we are still dealing with some hard feelings they could, understandably, be reluctant to encounter that.
For you, it sounds like it's been a few months. Your usual sunny disposition is pretty well back but these friends aren't. Well, maybe they weren't "friends" at all. They enjoyed playing cards but weren't willing to make a connection that was any deeper.
Maybe they feel just insecure enough that being around someone with a noticeable difference is uncomfortable for them. Some people are just very superficial in their view of others. It's an adolescent thing that some never grow out of. They may have a prejudice against people with any kind of handicap. They may be afraid that this surgery of yours could one day happen to them.
So what do you do? For me, I might not have energy to deal with their issues for awhile (like a year). I'd focus on my own recovery and the great folks that are there for me. I'd get my own life rolling again and then consider if I really needed or wanted these people back in my life. If I really wanted to reconnect I would probably call or drop a note. Maybe by now I have new card playing friends--ones who don't care how many toes I have!!.
Do you have a question you would like Dee to address? If so, we invite you to ask Dee directly at deemalco@mindspring.com.
Dee Malchow, MN, RN, is a nurse case manager who is self employed and specializes in the care of amputations. She experienced a right below knee amputation at age 19 from a boating accident.
Over the past 37 years she has come into close contact with over 2500 amputees through organized skiing and soccer, mission work in Sierra Leone, research for Seattle Foot, and her position as a Clinical Nurse Specialist at the Harborview Medical Center in Seattle, a Level I Trauma Center. In 2001, she retired from Harborview after 34 years. Dee served as the facilitator for the weekly Harborview Amputee Support Group for 22 years and has taught several peer visitor training classes. She has written several related articles and is currently working on a book about the emotional impact of limb loss.
ACA News and Views
Public Policy and Advocacy Committee
by Becky Bruce
The Public Policy and Advocacy Committee (PPAC) has been charged with the duty of prioritizing the needs of all amputees. The focus and duty of the Committee is explained in this article, written by Brad Ruhl, ACA Board Member and Chairman of the PPAC. The intent of the Committee is to accurately represent the ACA database in advocacy efforts that have been identified by our constituency. The PPAC was not designed to advocate on behalf of individuals, but to represent the amputee community as a whole. Everyone has the opportunity to be heard and to express his or her opinions on matters that affect every aspect of amputee life by completing the survey found on the ACA Web site and in the May/June issue of inMotion. By completing the survey, our constituency has the opportunity to guide the Committee in a direction that best serves the entire amputee community.
The ACA has, for many years, taken a leading role in communicating the issues and concerns of amputees to a variety of professional and governmental agencies and individuals. This has been accomplished by the hard work, dedication, and drive of many individuals and groups both from within the ACA itself and outside the organization. However, in an attempt to embolden the efforts of all these different forces, the Board of Directors of the ACA recently adopted a more formalized process for sifting through the various issues, prioritizing them and then developing a more focused approach to publicly stating our position and promoting that position through advocacy efforts.
Advocacy, by definition, means to support, encourage, back, sponsor and or promote on behalf of something or someone. And advocacy on behalf of individuals that are affected by limb loss is both central and vital to fulfilling ACA's mission: to reach out to people with limb loss to empower them through education, support and advocacy. Through this public policy making process, a newly formed PPAC will identify new public policy issues, determine positions and direct ACA staff to carry-out advocacy actions through a variety of channels, including: concerned individuals and caregivers, support group leadership, volunteers, allied healthcare professionals, etc. The PPAC will be comprised of a subset of members of the Board of Directors and senior ACA staff. In most instances, advocacy actions or policy recommendations will consist of the development and advancement of official public policy statements and positions on the major issues.
It is incumbent upon the PPAC to strive to ensure that official statements and positions are aligned with the overall mission, goals and objectives of the ACA and that they are communicated frequently and clearly through every channel available to all ACA members, volunteers, staff, leadership and other organization friends and partners. When ACA does not have an established public policy position, PPAC will organize Policy Review Groups (PRGs), which will consider the issue and develop a formal policy statement. PRGs will be ad hoc entities comprised of ACA members, staff and volunteers--as well as others from the broader community, including partner organizations and experts--to discuss the issues and offer input and advice to the PPAC regarding support or opposition to the issues. Once this is complete, it will be up to the PPAC to take appropriate action by authorizing certain actions or submitting recommendations to the Executive Committee of the Board of Directors for approval. In addition, a Grassroots Committee comprised of ACA members, staff, and volunteers will work with the PPAC to develop targeted grassroots efforts around key ACA advocacy priorities. You now have the opportunity to let us know the issues and policies of greatest concern to you. The Public Policy Survey is now available to everyone on the ACA web site (http://www.amputee-coalition.org/aca_advocacy.html), as well as the May/June issue of inMotion. This is your opportunity to let your opinions be known and to let your voices be heard. Please, take advantage of it!
Thank you,
ACA Public Policy and Advocacy Committee
Send address changes and membership requests to the Amputee Coalition of America (ACA), 900 East Hill Avenue, Suite 205, Knoxville, TN 37915-2566. ACA membership is $25 per year for individuals and $75 per year for Support Group Membership. The opinions and editorial viewpoints expressed in the Communicator are those of the authors and do not necessarily reflect those of the Amputee Coalition of America. This publication is partially supported by Grant No. US59/CCU41-4287-03 from the Centers for Disease Control & Prevention (CDC). Its contents do not necessarily represent the official views of the CDC. ©2000 by ACA; all rights reserved. Articles may be reprinted with proper acknowledgements unless otherwise specified by author.