Yesterday when I began writing The Path Leading Away From Hell I knew halfway in, I wouldn’t have time to finish, but I plowed along anyway and at a certain point had to stop. To pick up where I left off - until recently finding a “cure” to my mind, was synonymous with helping Emma overcome all the things that caused her such pain and misery. ”Curing” her meant finding a way to help her read and write, figuring out how to help her with her GI issues, helping her with language and speech so that she might have an easier time making friends, helping her with her vast and varied sensory issues, helping her tolerate change, finding alternate ways for her to cope when she was overwhelmed so that she would not bite herself and punch herself in the face, helping her stay engaged and focused so that she might progress academically, helping her be in the world so that she might one day have the opportunity to live independently should she want to, surrounded by people she loved and who loved her. I was intent on finding ways to help give her the tools she would need to travel if she wanted to, find a job and career she found interesting and close friends so that she might never feel alone. These were/are my goals for Emma, and the word “cure” seemed to sum up all of these points, succinctly, in one compact word.
When I began reading blogs written by adult autists who objected vehemently to the word, “cure,” I was surprised. At first I didn’t understand and reasoned that they objected because they were functioning at a much higher level than Emma is and does. They spoke and articulated what they thought. Emma cannot do any of that. I felt sure that if they were unable to make their opinions and feelings known, they too would seek a “cure.” But then I read some posts by autists who were not able to live independently, who had tremendous difficulty keeping a job, who found social situations impossible, yet they too objected to the use of the word “cure.”
I knew I was missing something, so I kept reading. I wanted to understand. I have always wanted to understand. After days spent reading blogs and comments, many of which I’ve listed in past posts and some that are featured on the blogroll on this site, I came upon an autistic woman who described two general types of parents, the first who wanted their autistic child to function as best they could and would do everything in their power to help them accomplish this and the second was a parent who wanted to cure their child of their autism so that they might have a “normal” child instead. It was in reading her description that I began to understand, this wasn’t an argument about “cures” in the way I had understood and interpreted that word to mean regarding Emma, this was about the potency of words and how they can be used to dehumanize, discriminate and hurt.
No one was saying – Don’t help your child. On the contrary, almost every single autist who wrote on the subject, spoke of the many challenges they faced and of the help they often required. The argument was not about debating the merits or worthiness of who needed help, this was not a debate about needs, challenges, being non-verbal or verbal, being independent or dependent, the number that accompanied ones IQ or where on the autism spectrum one was. What most of the autists I read objected to, was the use of the word “cure” because it implied who they fundamentally are, needed to be excised.
Many spoke of the shame they felt growing up, the alienation, and punishment they endured because of how they were perceived. Almost everyone mentioned being bullied, being abused, being subjected to insults, derision and criticism. All because they were autistic. Add to that the various erroneous theories regarding autism and how autists lack empathy, do not feel as neuro-typicals do and you can begin to see how destructive this type of thinking is. Dehumanizing and marginalization are the ways of war. It is how people have justified acts of violence against others throughout history. Dehumanizing autists with talk of “cures” and theories regarding how they do not feel are ways in which people can rationalize abuse.
Words have power, despite the old adage about sticks and stones. There are certain words I do not use under any circumstances because they are potent, derogatory and hurtful. Words such as c*nt, the “N” word and r*tard are words I do not use. I don’t spend time thinking about these words, they are words, yes, but they are not in my vocabulary. The word “c*re” in relation to autism is another word I have added to that list.
It is human nature to want to be understood, to be listened to, and to connect with others. But first there must be a conversation, a dialogue in which we all participate, in which each person is listened to and given the chance to voice their opinion. Who knows, we may learn all sorts of things.
I certainly have.