Questions On Ethics of Writing about Someone

July 17, 2014
Two years ago, when I started writing this blog, my friend, Ewa, expressed her concerns if not her apprehension. She asked what right did I have to write about another person without that person’s consent. She found it even more disturbing that I wanted to report on a life of a person who might not be able to give a consent. What about his privacy, about intimate details of his every day struggles?
Two years ago, I was sure she was wrong.
It is true that rarely, if ever, I write about teaching and learning in general terms. I am always recording what I have learned about teaching just ROBERT, about just HIS learning. It is always about him and about my way of understanding him through the ways he responds to the teaching. It is not about abstract person with autism, OCD, and severe language delays. It is about Robert.
This is as personal as it can be.
I believed that without my writing, nobody, including me, would really know Robert. The way he perceives the world. The rules he deduces from repeating themselves events. The rules, he tries to maintain. His not efforts to be helpful would not be recognized but might lead to confusion and disappointments.

In the past, not only did I feel, that I had a right to document Robert’s life as it had been unfolding itself to me, but that I had the obligation to write about him. I am understanding Robert better not only through our studies together, but also through this writing. Many aspects of Robert’s behaviors became clearer when I am forced to think about them during writing.
I do want others to know Robert too. Sadly, it is very easy to dismiss him after short observation. He rarely answers other people greetings or questions.He never explains himself. He moves among people as if they didn’t exist to him, or as if he knew that he doesn’t matter for them. It is hard to know Robert. But I think, that his very survival depends on other people knowing him. Besides, he is worth knowing.
I do hope that one day, it would be possible for Robert to read at least some posts I wrote about him and see himself through my eyes.
For those reasons until now, I haven’t had any doubts about writing this blog.
So sudden emergence of doubts about appropriateness of recording all the events from Robert’s life, took me by surprise.
He is a 22 years old man. He understands things I don’t. He perceives the world differently. I have very limited knowledge of what he feels or what he knows.
So am I even able to present correct profile of my son?
But even if I report correctly on the problems Robert has when he wants to maintain rigidly the same rules in new situations, do I help him or expose him to the ridicule of others.
This Wednesday, Robert had hard time accepting a new rule needed to address a novel situation. Although I understood Robert’s “point of view” and could very well empathize with him, I found myself unable to write about it. I was afraid that I could very easily create the wrong picture of Robert in the eyes of others. That gave me pause.
Also this week, I wrote a short post in which I mentioned by the first name one of Robert’s friends. Only later, I asked the mother of this friend for permission to do so. Although, she was fine with it, I asked myself a question, “How would I feel if someone else wrote the blog about Robert?”
I don’t know the answer.

I know that that with each RIGHT word the shield protecting Robert from misunderstandings and false impressions can get stronger.
But finding the right words is sometimes a challenge.

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1 Comment

  1. Jean

     /  August 2, 2014

    Keep writing, learning, loving and helping Robert.

    Reply

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