Growing up I knew I had a great-uncle who wasn't "right." He is there in my early memories from when I traveled with my grandparents to see their mothers. Uncle Bob was my grandfather's brother. He lived with his mother. I knew something was "wrong" with him...but I was a child. I didn't really understand. When she died (I was 9) he went to live in some type of residential facility. I don't know why, except that my grandparents were already caring for my grandmother's mother and I don't think they felt they could care for him, too. I am sure, knowing my grandparents, this was planned out and agreed upon with his mother. I visited him once with my grandparents a few years later. My grandparents kept in touch with him through phone calls and as many visits as they could-at least yearly (we lived in Pittsburgh and he lived, I think, in St. Louis-or somewhere relatively nearby.) They talked about him. A few years ago I saw him in a picture, and pointed him out to my siblings. It was at that moment I realized he had Down Syndrome. To my adult mind, it explained everything in an instant.
Working in special education you hear of how things "used to be." That children with disabilities were routinely sent away to institutions, never seen again. I admire my family for refusing to do that to Uncle Bob. They realized that Down Syndrome made him who he was-and that he was a part of the family no matter what. I am sure it was difficult-in a time when a disabled child was a stigma.
I knew my Uncle Bob. My grandfather new his brother. My Dad knew his uncle.
I can't imagine how I would feel if I didn't even know about him and then finding out years later he was institutionalized his whole life. Alone.
What would I have done? What would you have done?
There is a documentary about this topic. You can learn about it here.
You can read the story here. (keep tissues handy)