Freya’s son is disabled. Nothing at all like “ours.” The problem lies in the fact that his intellect is normal, his disability is physical, and not so big a deal (to us, it is all relative) … but enough that middle school is a bitch. He often eats in the school cafeteria alone, others won’t sit with him. His is bullied to an extent. Freya is a strong woman, does all she can, works wonderfully with the school, makes sure her son has all the services he needs, but what can be done socially? She knows that when she was a teenager, she would have had nothing to do with a boy like this … now she fears he will never have a girlfriend (which, trust me, is not the case), not go to the prom (hell, I didn’t go to mine), etc.
At his IEP today, she made it clear that she would do anything for him to be oblivious to the fact that others react to his disability. He loses it at times crying about how others react to him, how he is treated. She would prefer him to have mental impairments that would spare him the pain of knowing what others do / say / think, than the pain he endures by knowing.
I said “no you don’t.”
I made a very public fight to get Pearlsky excused from the awful No Child Left Behind testing (and won). My core argument was that Pearlsky has NO communication and without any communication, any type of knowledge testing is insane. I also made the argument that Pearlsky does understand what is going on around her and to ask her questions (which the testing demands, even for this population) where she knows you are asking a question, she may even know the answer, but she cannot communicate it, is just cruel. Let’s add to that the fact that she hears how important the test is, how everyone tries to pass, and knowing this, she still cannot answer the question. She knows she is failing.
That is just wrong. (And yes, some speculation.)
Is it better to believe she is oblivious? Do I want Pearlsky to not know she is disabled? Is her world the immediate one yard (one meter) around her chair and no more? Would she be better off? Am I better off believing that Pearlsky has no intelligence, does not know that she is disabled, that others look at her with pity at times, that children point, that adults look the other way? Or do I want her to know? Wouldn’t it be awful if she knows just how disabled she is? What if I word it this way … wouldn’t it be awful if she knows just how abnormal she is?
I wish I was oblivious.