First Memory of Disability Updatedby Rebel Mommy, raisingrebelsouls.blogspot.com
April 29th 2012
I originally blogged this story back in April, but recently, I found a photograph, and felt I needed to go back and add it in here. It is so interesting to see how life unfolds. This picture foreshadows so much. I love that Marsha is on my shoulders. I love the look on my young face. I love my life as it has unfolded, and I love my disabled family. For some reason I have got it in my head that I want to go back and write about my life experiences encountering disability. I do not know what I am looking for or where these reflections will take me. I wonder. How did I come to view disability and the disabled community like I did, like I do? What lead me all the way up to my sons? The only place to start is the beginning, and that would have to be with Marsha.When I was a small child, the same age as my boys are now, my Mother taught adults with a variety of disabilities. I remember being at the school house, and it was very much like an old fashion house or church, with double doors on the front porch painted in light blue (my duo, obsessed with doors, would appreciate that detail). Incidentally, this was 30 or so years ago, and my Mother claims that many of her students were labeled "mentally retarded," although now, with all we have learned about Autism, she also sees that a fair portion of those exact same students were likely Autistic instead. That is all a side note, however, because I am getting back to my first friend with disability, Marsha.For some reason, she was my favorite of all my Mother's students. When ever I went to the school house, it was her I was looking for. Maybe we just connected? Maybe it's because she had long, dark, brown hair, and I admired that? She also had very shiny and pink skin, with patches all over her body. My Mother knew I liked Marsha, so when I asked, she confided in me that Marsha had been burned by a horrible fire, when she was just a child. This frightened me terribly, and I remember having nightmares that the fire would get to me too. I felt sorry for Marsha and all that had happened to her, but I wanted to be her friend more than that sorrow.Now, for a reason I don't know, one night Marsha needed to spend the night at our house. I was very excited, as this was probably my first sleep over. I remember clearing my stuffed animal collection off of the second, unused, twin bed in my room in preparation for her stay. The star of that collection, in my three year old eyes, without a doubt, was my life sized, hand made, and then nameless doll. By my standards today, this doll is as frightening as that fire, with all too realistic dark hair cut from a wig, a weird, shiny, satin chosen for the face, and the stitching was all sloppy, with threads disgracefully thick. In my young mind though, there was no word, no idea, for ugly, yet. There was only love for this doll.When Marsha finally came over, we played with my doll and other toys, watched TV and ate popcorn, and she even helped to give me a bath. I was thrilled! I went to sleep that night comforted by her presence in the room, next to me, by her friendship. When she had gone, and I have no memory of her beyond that night, I was playing alone again with my doll, and I somehow made the connection. I gave my doll a name, the name of my first disabled friend, Marsha. There was only love.
It took me years before I realized that my doll was anything other than my beautiful friend, that my doll was in actuality hideous by the standards of those who are "grown." Where does that change happen? I wonder still.
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