Family Issues Archives

Beyond Survival with Spirit
By Nancy Miller, Ph.D.

Learning that your child has a disability probably included a lot of immediate and delayed reactions such as shock, disbelief, confusion, anger, helplessness, fear, and a lot of questions. In the beginning, your main focus may have been on just surviving the initial "getting used to": doing what you had to do, trying to balance your roller-coaster emotions with what needed to be done for your child, your family, yourself. You probably found yourself dealing with specialists in fields you never heard of, explaining things you didn't understand. You were just surviving: getting by, using all your energy, doing what you had to, worrying about the future, feeling out of control.

There were - and maybe still are - so many questions racing through your mind in learning about the medical aspects of your child's disability: what can help, what might make things worse? Should we try medications, diets, therapies, and if so, how many? How will we know what works? What about experimental drugs and interventions? What will the future be like; and will there ever be a cure?

Then there are the social questions parents ask themselves: who should we tell, what and when and how should we tell them, what will be their reactions, will we or our child be rejected, will our child fit in and be able to be comfortable and accepted? Will our child ever be able to read, drive, to be involved in sports, to live away from home, to get married, to make his or her own choices about what kinds of life to live?

Having a disability in your family means learning to live with unpredictability and the knowledge that there are some things in life you cannot control - sometimes on a daily basis, and over the long term. (Actually, ALL life is like that, isn't it?) But when "disability" is one of the family considerations, you tend to ask important questions a lot earlier, a lot more frequently, and with a deep sense of how much influence the rest of society has over your child's future.

Everybody gets through the initial stage of surviving in his or her own way and time. Along the way, you reach important turning points as you notice some feelings that begin to emerge from the fog and stand out very clearly. (Some of them kind of hit you in the face, or suddenly emerge like a bright light turning on!)

1. You realize you need a sense of direction - a focus.

2. You're feeling like a robot, just dealing with each problem that comes up, over and over.

3. You know it's time to get some new information, and find a new line of action.

4. You feel a stirring of new energy and some sense of purpose in your situation.

5. You realize things could be worse.

6. You become aware that you have to - and want to - be your child's advocate in a positive and effective way, and that this takes time, energy, organization, and support.

7. Your values about what is important in life begin to shift in new directions.

Everybody searches outside for information, interventions, and support. Everybody searches inside for the answers to questions such as, Why me? Why my child? Can I do this? How does this change the course of our lives as individuals and as a family? There are basically two ways to live your life: Reactive or Proactive.

The Reactive path is the one in which you basically define yourself - or perhaps your child, or even your whole family - as a victim, a helpless recipient of an incurable condition. Entering the victim role usually results in some general tendencies of feeling powerless, angry, depressed, resentful, ashamed, secretive, self-pitying, living with an overall sense that something is missing from your life, and that your child's disability defines and controls your life. Living in a Reactive frame of mind reduces your energy, your self-confidence, your self-esteem, your effectiveness. If you focus on what you, or your child, can't do, won't ever do, shouldn't do, you are already determining your future. A Reactive life style is not a life of spirit; in fact, it depletes whatever spirit you may have. And a life without spirit is a life without optimism, energy, cheer, or vigor.

The Proactive path is the life of spirit. What is spirit? According to the Oxford English Dictionary, spirit has many definitions. The ones that most readily apply include the following: vigor of mind, courage, readiness to assert oneself or to hold one's own; liveliness or animation in actions and communications, cheerfulness, a brisk or lively quality. The Proactive life focuses on thoughts such as "This is our life. Everybody's got something they have to deal with and this is what we've got (for now). It could be better but it could be worse, and we will deal with whatever has to be done in the best way we can. We will live our lives and have a quality life, knowing that some limitations may exist, but everybody has some limitations. We aren't asked to choose which ones we'd prefer, so we will accept the ones we have. We will honor them, integrate them, work with them, learn from them.

The Reactive path reduces spirit. The Proactive life produces spirit. Spirit has a few other meanings that apply to the Proactive life. Spirit can refer to a feeling or state of mind with which something is done. You've probably heard the term "That's the spirit!" when somebody does something with determination, enthusiasm, or courage. You've also heard of Team Spirit... the U.S. Women's Soccer Team of 1999 is a great example of team spirit and how they brought everyone together in sharing that spirit. Team spirit applies to all kinds of teams: professionals working together toward the same goals in an early intervention program, or to put on a conference for continuing education, or keep an agency moving and growing. Team spirit exists in families who work together to create a happy, energetic, goal-directed life, and it certainly exists when parent-professional teams work together with the Proactive spirit of moving toward goals in spite of the many obstacles, policies, and other frustrations that can get in the way. Team spirit rises above the obstacles and sees them as movable, temporary roadblocks that need everybody pushing in the same direction to get them out of the way. For those of you with religious affiliations, you know the comfort, release, and energy that can come from your spiritual relationship with your God. And spirit refers to the "spirit of the times": the prevailing tone or tendency of a particular period of time. The spirit of our time today is that disabilities are coming out of the proverbial closet, and people are becoming more familiar with more kinds of disabilities, they are seeing more people in more roles in more places with more kinds of disabilities, and people are becoming a teeeeeny bit more comfortable as people with disabilities are seen more often in the media and in everyday life.

Many people with disabilities today are saying that their impairments, with their physical limitations are not as big a problem as the way they are viewed by society. Our society isn't comfortable with the idea of disability, and there's a very real "us vs. them" distinction that everybody feels and hardly anybody talks about. Yet. Having a disability is not just about a diagnosis, or symptoms, or using assistive technology, or taking medications. It's not just about having an unusual appearance difference, or behaving in ways that are considered inappropriate or even bizarre. It's not just about movement differences such as using a wheelchair, a walker or a cane, or having hand tremors; or about communicating in ways that take a little more time and patience to be understood. It's not just about having trouble learning as quickly or as much, or in the same ways as the "typical" person.

Let's be honest. For the most part, our society still doesn't want to see people who look different in what is considered an unattractive way. For the most part, people and businesses don't want to be slowed down by "those people" who walk, roll, talk, think, or learn too slowly or differently. I think everybody's uncomfortable to some degree with some kinds of disability differences. Many people are afraid of people with disabilities, especially the disabilities you can't see or predict or that make people feel at a loss about where to look, or what to say or do.

As parents, or other relative of a child with a disability - or as professionals (or both), our mandate for the next century has to be to carry a Proactive spirit of optimism, of the readiness to assert ourselves and to do so with cheerfulness, determination, and courage. Most people don't want to be afraid, or uncomfortable, around your child - or others with disabilities. We're all on a "learning curve" these days, with all of our personal comfort zones for disabilities expanding through increasing contacts.

Meanwhile, more inclusive laws and policies are necessary. But we can't take a Reactive path and wait for others to change their attitudes and make change happen. We must all be Proactive. We must acknowledge that the reality is that people ARE uncomfortable about disabilities and that's normal when people aren't informed and exposed to people with disabilities in everyday life. It is up to us to inform others in positive ways on a personal level and to work together with team spirit for increased awareness and education and appreciation of the broad range of human differences.

Much of the spirit for change must come from within the disability community. The spirit for greater equality and quality of life as we begin a new century must continue to be generated and pushed forward by people like you, like me, and the people we connect to every day. We can best do this on a personal level, by creating circles of change that can expand to our extended families, friendships, neighborhoods, social groups, houses of worship, schools, and work places. Each one of us who carries the spirit and shares it with another adds to the circle of change in each community.

 

This paper was originally presented as the keynote address for the Southern California Epilepsy Conference, Living Well With Epilepsy, Oxnard, CA, July, 1999. For further exploration of these ideas, please see Everybody's Different: Understanding and Changing Our Reactions to Disabilities by Nancy Miller and Catherine Sammons, Brookes Publishing Co., 1999.

 

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