I recently came across a blog that is funny and poignant. The blog, "What Do You Do Dear" is written by Mary Evelyn the mother of a young boy who has spina bifida. Evelyn is an Orthodox Christian (a term I am unfamiliar with) and a school librarian. She found out her son had spina bifida during a routine 20 week ultrasound. Since the day their son was diagnosed in-utero she and her husband have had a crash course on not only his physical impairment but about disability in general. Evelyn's level of awareness regarding disability makes for a fascinating read from the point of diagnosis to the present. Evelyn's knowledge base about spina bifida grows daily as does the level awareness about disability in general. I highly recommend this blog. Link: http://www.whatdoyoudodear.com
The most recent blog entry, "A Leak in the System: When a Little Girl Felt Sorry for My Son", made me consigned to the fact I will not live to see the day when people with a disability are truly equal. Not equal by the letter of the law (ADA) but rather by American society. I will never be ordinary. I will always been seen by others, typical others, as a tragic figure, one who is deeply stigmatized. All people of course do not think this way and I do my best to assert my equality. This is an uphill and sometimes even a losing battle. But fight I must for if I do not who will? I do not fight for myself. I fight for the guy behind me. It has been and remains my hope that no human being experience the sort of discrimination I have experienced.
I am deeply pessimistic about the future because secondary schools teach children all the wrong lessons about disability. The term "special education" surely does not help the perception of disability. Nor does the continued use of segregated schools and school transportation industry. Too often students with a disability are shunted off to resource rooms. Lip service is paid to "mainstreaming". Basic access is problematic at best. Side accessible entrances to schools abound as do locked doors that place students and disabled adults in a position of dependency. With regard to transportation to and from school and class trips the norm remains for children with a disability to ride the short bus. These are flagrant examples of segregation and I will limit my discussion here as far worse things take place in schools (Abuse, physical and psychological, are commonly experienced by students with a disability). A lesson is being taught nationwide. Children by the time they are in 1st, 2nd, or 3rd grade have learned a basic fact as it relates to disability: segregation is the norm. Worse, it is socially acceptable. "Special education" buses are routinely referred to in secondary schools as the "retard bus". The consequences of a segregated system are profound. Disability children are taught is bad. This lesson is taught at schools and in every day life. Mothers routinely tell children when they see a person using a wheelchair "to watch out". I have heard this line for 37 years. Bipedal people routinely leap out of my way as though I am a locomotive going 75mph and am out of control. The fact I am 20 0r 300 feet away form them does not matter. A wheelchair is to be feared. Disability is be avoided at all costs. My wheelchair is thus akin to a portable social isolation device.
The above thoughts were prompted by Evelyn's post in which she writes about the reaction of a cute six year old girl who saw her son.
She walked up to my son, as he wheeled in circles outside the sanctuary after church, and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello.
And then, without taking her eyes from his face, she said "I feel sorry for him."
I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.
Children ask all sorts of question about my son.
Why is he in that? Why can't he walk? What's wrong with him? Will he need that thing forever?
But questions are easy. For children, questions have answers.
"I feel sorry for him" is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.
A system that tells her my son's wheelchair is "very sad."
A system that tells her he is a "poor thing."
A system that uses words like confined to, suffers from, and bound.
A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers, and friends.
A system that tells her my son smiles "in spite of" rather than simply because he too is a child and has access to all the same earthly wonders that she does. Link: http://www.whatdoyoudodear.com
This breaks my heart. I do not feel bad for Evelyn's son. He is going to encounter far worse prejudice in his life time. He needs to learn how to fight back against such ignorance and bigotry over the span of his lifetime. I do feel bad for Evelyn. There is absolutely nothing she can do to change what she calls the system. She cannot protect her son from disability based bias. Evelyn notes she is only one person--a sentiment that I can related to. I am one person too and I am not afraid to admit there are days I cannot leave my home because I cannot tolerate the inevitable social denigration that comes with interacting with others. But we, meaning we people who reject ableism, must multiply and educate. We must do this daily. It is a lousy job. It is depressing to be surrounded by bipedal hordes who do not know a thing about disability but think they know all. Worse, all they know is wrong. All they have been taught is wrong. This is exactly why the story Evelyn penned is so sad. A six year old with seven decades of life ahead of her is unknowingly a bigot. I have no doubt the girl in question can be educated. I am sure her views can change. The point here is she has been taught and absorbed lessons that inherently destructive to a class of people. She might change her views. She might not if she has no direct experience with disability. For it is that human connection to a loved one with a disability that represents hope for the future. Evelyn ends her post with a feel good story.
Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19-years-old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.
"Something's wrong with that kid" he whispered to her. "Did you see his back? He can't walk. So sad..."
I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child's life is very very sad.
"It's not sad" she said, looking at my son with so much kindness. "My brother was in the Special Olympics. Nothing sad about it. That kid is cute."
And then my heart turned to mush and I closed my eyes to keep from crying.
I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.
More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.
I am only one person.
But I am not alone.
Evelyn is not alone nor am I. I am not sure how Evelyn felt after she wrote her post but her words depressed me. Initially I was ready to pump my fist and say "YES!" Then reality set in. Why is the teenage girl described above rare? Why are we human beings so quick to judge others on something as inconsequential as wheelchair use? Really, are we human beings that shallow? Are we that unwilling to open our minds to others who navigate the world differently? Are we unable to incorporate and educate those that think differently and not at the typical, perhaps demanded, pace? The answer to all these questions is yes. By itself this is damning to our educational system and the culture that created and perpetuates it. I for one will spend the rest of my rejecting such a destructive system and doing all I can to fundamentally change the way people perceive disability. Education I am sure is the key. We need to do better. All of us must do better. A class of people are actively discriminated against and lives are at stake.
