Rapport: June 1994.
Friday May 3rd, 10:15pm. This is the first day of a three day weekend retreat sponsored by the Family Support Institute Ontario. The introduction portion of the opening reception has just ended and people are mingling about. I have been struck by a number of realizations so compelling that Ive had to commit them to paper.
As the introductions went around the room I started to catch a glimpse of a perspective I hadnt seen for a long time. That of an outsider looking in, not as another parent with disabled children.
I started to see that to someone else this room would have seem full of tragic stories, families and children suffering at the hands of fates and bureaucracies. Yet, in this room there was no sense of tragedy.
There was laughter, giggles, jokes. There was strength and resilience. There was empowerment and determination.
There was no anger, no hopelessness, no sense of defeat. No one here saw their life as a tragedy. There were only those who have struggled most of their lives for their children, those who are struggling now, and those who are just beginning to struggle.
Tonight I saw the strength of the human condition. Despite all that we have been through we are just families. Families with hopes and dreams and laughter and tears. Tonight I saw the face of hope in the word family.
Protection or Segregation?
The child with a disability does not experience childhood in the typical way that most of us would refer to as normal. By virtue of the limitations the child experiences as a result of his or her disability, but more so by result of societys reaction to its perceptions of those limitations the child is often denied the opportunity to experience hundreds of typical childhood experiences. Some of those, may be very small, one might even say insignificant, everyday events, but it is those tiny everyday denials that define systemic bias. In the long run it is that systemic bias that leads to the tragedy of even larger denials of rights and freedoms.
One of the deepest and most painful results of this systemic bias is the isolation it places the child in, and by extension his or her siblings and parents. There is always the risk of the entire family dynamic and social opportunities becoming defined by the disability. From very early on in the childs diagnosis we begin to segregate him or her from their so called normal peers. We place them in special classes in the name of therapy or to protect them from the ridicule of their peers or because we believe that they cannot handle the demands of an integrated placement. Even within integrated placements many simple opportunities available to their peers are often denied to them. No matter what the disability the child is still a child, enjoys the same things, dislikes the same things as his/her peers. He or she wants to play, be loved, be safe, have friends. It isnt enough that they may be allowed to go to a regular school, even given aide, support and program modifications to help them manage in the classroom when inter-mural activities, extra curricular clubs and groups are either subtly or overtly denied to them.
Siblings become isolated too, in subtle ways, increased responsibility within the family, embarrassment about their different sibling, unsupported fear by their friends or their friends families. Parents can become dependent on support groups, even long time friends may feel uncomfortable or self-conscience. In attempts to join groups like PTAs the parent of the disabled child is often seen as representing a "special interest group" and being of limited contribution and are not seen as being representative of all the children as a whole.
The child, having been raised within this environment of isolation is generally more comfortable with it than their parents, who having been generally raised within our societys norms will often find the adaptation difficult and stressful. Combined with the stress and worry inherent in raising a disabled child it can at times become emotionally overwhelming. The parent will often seek the aide and support of their community and government services in an attempt to reduce the stress levels and normalize the situation as much as possible. If those supports are inadequate, as is the case more often than not, the family and the child are at risk. The parent no longer able to cope places the child in a care facility, now the child is not only been isolated from his or her peers and society in general but from their very families as well. Its not surprising given these circumstances that the child can grow up hardened and embittered by the experience. Although, sometimes, fortunately with a good placement, love, support and a bit of luck, the child becomes more compassionate, more empathic to other disenfranchised members of society. The ugly irony of this scenario is that it costs society more, both financially and in resources to provide care for the child within a care facility than it would have to support the family as a unit in the first place. The cost of the losses of the childs potential, the damage emotionally to the entire family, those things are incalculable.
Do we owe these children a normal childhood? Do we have an obligation to spend whatever educational dollars may be required to see that the child is fully included in the educational and social experience school is? Does their right to live within their nuclear family unit extend beyond that familys ability to care for them? Do we as a society owe it to them to give their families whatever support may be necessary for the child to continue living with them?
Part of our viewpoint on these issues will rely heavily on our political viewpoint and how we define both societys and subsequently governments responsibility to all children. It has been said, "that it takes a village to raise a child", society owes a responsibility to all children to see that they reach their full potential. This is not simply a moral responsibility but an economic and evolutionary imperative. For the cost of caring for an individual who has not made the most of his or her life is far greater than for one who has. The cost to our humanity if we continue to marginalize whole sectors of our society is far worse. Our children are our future, if we really want to invest in the future of our society, we must invest in our children.