Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 1 , Issue 3 Date: Spring, 2001 Topic: Community Membership


by Karlene Shea


Attitude---mine-yours- theirs. If we could control or change attitudes our work would be a lot easier. How do we come by our attitudes, most of us really don’t know, we just have them. In the beginning there was a void. We were not born with attitudes. We subconsciously absorbed information spouted by others or just inferred by others. Our work as facilitators for people with disabilities is one of damage control. We need to help people realize that we are doing people with disabilities a great injustice by assuming what they can and cannot do.

My work in the field of integration has focused on getting non-disabled people to know one person with a disability so that they can then appreciate the abilities or gifts that person has to offer. My hope for the future is that given more school inclusion, negative attitudes will dwindle because children will have friends with disabilities who will continue to be their friends in adulthood.

I call my work “the possibilities of belonging,” because if you belong the possibilities are unlimited. Think about your own life for a minute. You belong to a family, maybe a church or community organization, perhaps a bowling league or the softball team at work. There is someplace where you feel that you belong and you are accepted for who you are. We need to help people with disabilities have that same feeling of being accepted just as they are.

I talked a little about society’s attitudes but how about the attitudes of people with disabilities? Often they are disenfranchised because for years they have been offered false promises by people who then leave them unfulfilled. Is it any wonder that we first need to prove ourselves before they will follow us into the frightening world of community? But follow us they will if we just spend time getting to really know them and letting them get to know and trust us.

Everything that I have learned about how the world works, I have learned by being a worker bee. I learned early on to start by doing the jobs that no one else wanted to do and then work my way up. I always considered myself a part of my community and I saw no reason why people with disabilities should not have the same opportunity. So off we went to conquer the world, build bridges and make friends. I now have fifteen years of experiences and stories that will warm your hearts and prove once more that society with all its faults can come through when it really counts.

Others will write about strategies, long and short term goals, theories and outcomes. I’ll just simply tell you that a person with a disability, given the opportunity to participate and someone by their side to encourage and support them, can change these attitudes that are so negative and harmful. I used to think that I was doing community education, but I found that the person with the disability was actually doing all the work. They were showing others how wrong they had been in thinking they were from different worlds and I was only along for the ride. Now I realize that my job is to let people who have not been lucky enough to personally know someone with a disability understand just what they have been missing.

Another job I have is to encourage staff working in the field to be the person who has a vision of what is possible and to share that vision with the person they serve. This is probably someone who has not experienced much success in their life so we must give them that first sweet taste. After that it will be a lot easier. Next, they may have to convince others that a better life is indeed possible for this person. Sometimes it is hard for others to buy into this vision. They are blinded by who the person used to be. They can’t see the possibility that if someone’s life changes for the better that person will also change. It is then staff’s responsibility to demonstrate what can happen. Encouraging and supporting a vision to change attitudes is key to the success of this work. I never said it could be done quickly but I say it can be done.

George’s Story

George, whom I helped join the Knights of Columbus, has been a wonderful ambassador for people with disabilities. I will never forget what one of the Knights told me at George’s birthday party. He said that before George joined his council he had seen him riding his bike around the neighborhood, but he had never spoken with George. He said that he would cross the street when he saw George coming because he was uncomfortable and he didn’t know what to say, so it was easier to avoid the situation. He then told me that since he had gotten to know George as a fellow Knight, George has taught him that there are no differences in people, just in abilities. He will never cross the street again when he sees a person with a disability because George has taught him that we are all the same. This is the kind of education that we need to provide so that people can learn for themselves what those of us doing this work already know.

Over the years I have watched George break down barrier after barrier as he grew in his role as friend, neighbor, Knight, customer, bingo volunteer, bowling league member, ticket seller, new member recruiter and now, even to my surprise, fiancée. When I was asked what George’s life story has taught me I realized that it is about potential. We are always saying that one of our priorities is to help the people we work with live up to their potential, but we really don’t know what a person’s potential is. Potential can grow in proportion to opportunity and expectations. If we provide people with opportunities and we have high expectations that they will succeed, there is no limit to what they can accomplish.

The Call to Action

If you are looking for a career where you can make lots of money look elsewhere. But if you are looking for satisfaction that goes beyond belief, welcome home. There are some things in life that money can’t buy, a smile, a hug, a friend for life, the satisfaction that you have made a difference. I am offering you hard work, long hours, low pay and the opportunity to make a difference in someone’s life. Who could ask for anything more?

If you do indeed decide that this is the work for you, you must examine your own attitude. You must see if you have the ability to weather rejection, ask for help, practice humility, be a role model, use every teachable moment that presents itself, and accept the fact that everyday you will be learning from the real experts in the field, the people with disabilities.

The day you stop listening will be the day you stop learning and that will be the end of your effectiveness. When you start to think that you have all the answers, you will no longer be productive. You will have all the answers when the sun stops setting and the grass stops growing, because there will always be new questions. The only way you can keep current is to stay in touch with the people who are living the problems that we are attempting to solve.

Staff training is a vital part of what we are striving for, but alone it is not enough. They are often looking for cookie cutter answers that don’t exist. Each person we work with needs and deserves his or her own personal vision. This is only possible if we take the time to really get to know this person and if this person knows and trusts us. Only after we have proven ourselves by following through on our promises will this person start to open up and let us into their lives. You darn well better not disappoint them because it will take years for them to trust again! This process is slow. There are no “quick fixes.”

It is especially slow if the person is severely disabled. It takes much longer to get to know this person. Often a person who is severely physically disabled is presumed to be severely mentally disabled. This is not always the case. But if this person does not let you into their world you will never know for sure. Graham was in this situation. However, after his staff made the breakthrough and established a relationship with him, there has been no end to his accomplishments. I see him now once a year and each year his progress is wonderful to behold.

As leaders in the field we must be role models, supporters, sounding boards, resources, allies and teachers. This work cannot be done in a vacuum. A phone call should never go unanswered nor a request denied if it is at all possible to comply. We are all working towards one common goal, a better life for people with disabilities. We must all work together if we are to succeed.

It takes all kinds…

In this line of work there are doers and thinkers. I do not mean that the people doing the work are not giving great thought to what they are doing because they are. But they have little time for intellectual pursuits. They can present at only a few conferences, give a few workshops and manage to answer those calls looking for advice. The thinkers on the other hand are equally busy analyzing the work that has been done and lecturing extensively on that work. They are writing the articles that the doers don’t have time to write and they are getting the information out to all the people who need to know about it. Two roles, both very important, and both needing to be done .The best possible scenario is for a doer and a thinker to team up and work together, we need more of that.

It is important though that the thinkers get their feet wet. It is also vital that the thinkers do not over-analyze the issues to the point of not listening to the people with disabilities or taking into consideration their needs and desires. Let’s not get to the point where we think we have all the answers and we start to ignore the people who have the challenges. These challenges are imposed on them by society by the way we view their disability. We all want what is the very best for people with disabilities but wanting the best must not paralyze us into doing nothing. It is important that we keep moving forward one step at a time. A giant leap would be great but a small step is better than staying put.

There is also the role of teacher but I caution you about trying to fill this role without first having been a doer .You need the credibility of having done hands on work to be truly effective.

Finally, being a community developer is another important way to ensure success. You need to prepare the soil so to speak, if you want society to share your vision of what is possible for people with disabilities. This is done by demonstrating for others how life has changed for people with disabilities once they have cultivated that feeling of belonging. Get out and speak to community groups and church groups and civic organizations about the work you have been doing and the results of that work. Show them that the benefits of community membership are not limited to the person with the disability but extend to all of us who befriend this person.

People with disabilities are eager to do their part in making this world we all share a better place, if only we give them the opportunity to join us in establishing meaningful lives.

Karlene SheaKarlene Shea is the Director of Community Integration for Vanguard, Inc., of Chicopee, MA. As part of her role, she directs the Integration Facilitation Project for the Department Of Mental Retardation's Region 1. Her work focuses on helping people with disabilities become active members of their communities, teaching others how to do this and educating the community as to the importance of this work.

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