Friday, May 13, 2011

“Blogging Against Disablism Day” is May 1st, 2011

I’ll admit I’ve shied away from writing about the other side of my “sandwich” from my Dad’s—that is, about my daughter.  This is not because of what I would write about her impact on my life, but because she is much more likely to read it and that conveys, to me, a much greater responsibility to consider her feelings and wishes.  Today, though, it may be time.  I’ve just read a “tweet” from a colleague advising me that tomorrow, May 1st, is Blogging Against Disablism Day, or BADD.  badd02.gif is a link to the symbol for the day, and http://bit.ly/j48odZ is a link to the blog that is hosting the event. 
Since about the age of two, my daughter has struggled under a variety of disabilities—none terribly severe, in and of themselves, but in accumulation, seriously limiting.  I have come to believe, gradually, that the most disabling aspect of these various learning, behavioral, and emotional struggles has been the fact that she accepts them as a “disability.”
She believes in them, cannot see past them except in fantasy, gives them dominion over her efforts, allows them to define her life.  Once in a while, I see a glimmer of the person she might be if this were not the case and it is always a white hot moment of exhilaration, but sad, because the clouds close in again. 
I am sure that her father and I have contributed to this acceptance, as has the larger array of societal influences that set the disabled apart.  Parental worry, whether justified or not, is a powerful force in a child’s life—when you fear for your child’s survival, it changes you and them.  When the schools move your child into an outside placement, because she is too “low” or too “difficult” or too “different” to coexist with typical peers, it changes you and them.  Don’t mistake my meaning—it is not all “outside” influences—one’s own personality, two families full of people with attitudes and perspectives on this “different” child—all this influences how we see ourselves, how we see our child, and how our child sees herself.  And it accumulates, hour by hour, day by day, year by year. 
Disabilities are real.  Saying all the disabled children in the country will read on grade level by 2014 is ridiculous.  Saying there is no difference between a child with Autism or Down Syndrome and the child who has a huge vocabulary by age 4 or is the mainstay of his soccer team at age 7 is not useful.  We need to understand that each child is an individual and has his or her own personality and way of dealing with the world’s input.  We need to understand that giving each child, whether with a disability or no disability, the opportunity to develop as fully as possible and reach his or her potential, is the greatest gift of all.
Our daughter is nearing 40.  She lives with us, and this is not where we expected to be as we near retirement.  To be fair, it is not where she expected to be either.  The fabric of disability that surrounds her keeps her intelligence (which is strong and incisive, but muffled by anxiety) from leading her responses to the world.  It keeps her focus inward, toward her own needs more than others,’ in spite of a generous, giving spirit that always worries when tornadoes are headed for Atlanta, where her cousins live, and cares desperately for our two cats.  Our society’s view of disability in the ‘70s and ‘80s shaped her and her life, as did our family’s view of her emerging needs and the reactions of her ‘peers’ in school, in Girl Scouts, in college, and in the world of work, which she sampled and found wanting long ago.   
If this experience proves different for a child who comes into the world today, so much the better.

2 comments:

  1. Wonderful post, Nancy! Thanks for sharing this with us!

    ReplyDelete