Meaning of Family
The way we define or talk about family is of critical importance, and understanding the academic, political, social and practical consequences of these definitions are of critical importance. We must not passively accept the definition of family that society has created for us, but must actively search for the meanings and terms that are right for me. Once Ayrie was diagnosed with his disease, I have found myself relying on family more heavily and in different ways. In many ways it has brought us closer together and we have blurred traditional lines related to money and living arrangements. Our culture offers us a very limited range of perspectives about what family looks like or feels like that have been bound by time, place and culture. It is up to us to redefine family in the way that makes sense for us.
An ethic of caring
If people could develop a caring attitude toward each other, we could go a long way towards addressing issues of social justice and meeting the diverse needs of families with a rare pediatric illness. We can not meet our needs alone and medical personnel can only offer so much support. If we, as a culture, could replace apathy and indifference with caring and action, the world would indeed be a different place. Familiy members would be more supportive of each other, and would be more supported by others.
A focus on the positive
I am intrigued by scholars and practitioners who discuss issues of power but quickly move the conversation to a discussion of strengths and actions that people can take to improve their lives and the lives of other. Getting the diagnosis of a rare pediatric disease can stop time and pull out the ground from beneath us. I was so angry, scared and ashamed at first that I could not even look at the people I am closest to. But as we begin to make sense of our own situation and understand the needs of the child we love, we need to move to a place where our language is laced with positive language rather than negative. We need to help children and believe in themselves, in their instinct, in their ability to make good decisions and ultimately inspire them towards positive action and advocacy.
Leadership
Today we face a crisis in leadership in many areas of public and private life. Yet with misconceive the nature of these d=leadership crises. We attribute our problems too readily to our politicians and executives as though they were the cause of them…. To meet challenges such as these, we need a different idea of leadership and a new social contract that promote our adaptive capacities, rather than inappropriate expectations of authority. We need to reconceive and revitalize our civic life and the meaning of citizenship (Heifetz, 1994).
Without a doubt, the issues that face families with children who have a rare pediatric disorder can not be addressed in whole by elected officials, or leaders who gained leadership status through the accumulation of power and wealth. We need to take responsibility to the extent possible for our own lives by leading people into positive action. Leadership can emerge in a number of locations and contexts, (churches, block clubs, parent groups, schools, etc.) but we need people with a positive vision for youth, families and communities to help mobilize people for coherent action towards a shared, positive vision.
An expanded role for Community
“In the course of a relatively short time parents and children thus went from being incorporated into the wider society through large household or kinship units (not necessarily housed together) to a small privatized unit responsible for its own members, and dependent on economic work outside the domestic unit for support and selling labor for wages (Havas, 1995).
Few families can thrive in isolation. Our society has evolved in such a way that positions the nuclear family as an autonomous unit. They are ‘allowed’ to accept some help from extended family members, but not too much. In reality, we live in a transient society and many nuclear families do not live near their extended families. And even if they did, not every extended family contains all of the resources that families need. We must recognize that families are not autonomous entities, do not have the resources available to them in their extended family, and that families would be strengthened by being situated within positive supportive communities. The fabric of community that supports families needs to be tighter, stronger, more accessible and more forgiving.
