Parents as Advocates or Roadblocks to Inclusion?

The blog this week was written by George Martin, President of the Arcadia Institute. In the long and winding road toward full community participation parents of people with disabilities have often been champions. At times they have also blocked the path their son or daughter could have taken to be included in community life.

The history has many stories of parents who have fought hard, for instance, to keep large scale state institutions open. Some of my most difficult moments as a professional have been during those moments when I have sat across the table to face a parent who was angry at me because I was working to close down the institution in Coldwater. (I have also felt physically threatened by a school teacher after I gave a presentation one night in Berrien County advocating for inclusion in schools.)

I still have vivid memories of a day when I had asked a delegation of state officials and legislators to visit a segregated skill nursing home and was told by a group of parents that we could not come into the building.

What I also remember, however, was a day when one of those same parents came into office months later to tell me how thrilled that her daughter was doing so well since she had moved out of that same nursing home. She went on and on marveling at all that her daughter was learning to do that she never thought she would learn.

So, yes, I have seen parents become roadblocks to community, but I have also seen some of those same parents become strong supporters for community versus institutional life. I believe that parents who have a child with a disability have reason to hold the highest expectations for their sons and daughters. I also understand that they may limit their freedom because they have a fear of letting go and running the risk of hurt. This issue was one I faced when I became a professional in this field in 1975 and one I witness today.

The encouraging news is that every day we move further along the road to community.

George T. Martin President

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