Editorial

by Jan Burke-Gaffney

The Family Support Movement

There was a time, not so long ago, when people (some in their infancy) who had disabilities, were warehoused in large institutions where many of them died prematurely. Many parents were told by authoritative medical figures to put their babies and children away in these places. To pretend these child had never been born. To go on with their lives as if these children had never existed. Not all the families did this, but enough did, in spite of how much it hurt, to fill up these places.

Over time, fewer and fewer families listened to these voices and kept their children at home. This often meant great personal sacrifice as their neighbours and sometimes even members of their own families didn‚t understand why they would do this. More and more families kept their children at home and began to work to build places for their children in their own communities. They did not want their families broken apart.

Some time later, a few parents, usually one at a time, began taking their children with disabilities to the same schools they would have gone to if they had not had disabilities. Soon children began going to school with their brothers and sisters and neighbourhood friends. These children began joining Boy Scouts and Girl Guides. They began going to music and dance lessons; they showed up at rock concerts and graduationceremonies.

Many of these children became young men and women who had experienced
inclusion in many parts of their lives. They had not been excluded and
would not choose placements in day programs after high school. Families
looked around and saw services with waiting lists. But, these services
seemed to focus on resources and programs while the families were
focused on the person and the community.

Families wanted support to be meaningful and inclusive. For support to be meaningful it must come from decisions the family makes for itself. Nobody can come in from outside the family and tell the family what it needs, when and how much. The critical elements are choice and control. It is not even that all needs must be met; it is the manner by which these needs are being met. Without choice, families become what someone else says they are.

Families want to make their own choices, they know they are able and
competent to do so as the caregivers of their loved ones. Families are very able to define the type of support that would meet their needs. They know it must be flexible and work for the whole family. They know support changes as interests, ages, and roles change within families. Families can express their own desires and make the decisions as to how these desires should be met.

At the end of the day, our children are our chidren. We will stand by them, behind them and for them if they need us to. We will not repeat the mistakes of the past. We will listen to what the professionals tell us, but
we will make our own decisions. We believe in ourselves.
We are the Family Support Movement.

The Compass is a publication of

Family Alliance Ontario
c/o Hamilton Family Network
22 Leeming Street
Hamilton, ON Canada L8L 5T3

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