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Aunt Alice and Cousin Eddy

I realize that my previous posting was about another Alice but this one goes much further back in my life. This is about my Aunt Alice and her son Eddie. Eddie was probably a few years older than me…I am not certain of his exact age.  What I remember first about Eddie was that he had a large head and could not walk or talk. I was told that he was “retarded” and that his head was large due to having “water on the brain”. This is very disturbing stuff when you are a kid yourself. All I knew was that Eddie was part of the family.

Aunt Alice told me that when Eddie was born the doctors told her to put him in an institution because he would not live long anyway and that he would only be a burden. She refused to do that and brought him home where he lived all of his life.  She did everything for him with no help at all…no special lifts or in home assistance.  As Eddie grew older it became more and more difficult for Aunt Alice to lift him to put him to bed; into the tub; and into the car. And, although she was a small woman she found the strength to lift him from childhood into his adult life.  Eddie died when he was in his twenties and by that time the years of personal and physical sacrifices Aunt Alice had made had taken their toll on her own health and spirit. She was never the same after his death.

Aunt Alice and Cousin Eddie taught me my first lesson about disabilities.   I always understood her decision to care for Eddie at home but I also saw what it did to her.  I also understand how some parents decided to place their children in institutions. Hear that? I understand. When your doctor tells you “there is no hope” it carries a lot of weight.  The institutions were there. Community services were not. Aunt Alice made her decision but perhaps your Aunt Susie made a different one, but both made them in love and desperation. If your Aunt Susie is alive today tell her that you understand and then do what my Aunt Alice did…do some heavy lifting and strongly advocate for people’s rights, inclusion and community services for the next young parent and child who needs support and better choices.

 

Rick Chappell

Executive Director

 

 

   
         
         
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