What’s that you say?
My daughter is severely disabled. She is non-verbal, non-mobile and has an incredible personality. She cannot communicate a simple yes or no. She cannot signal where she hurts when in pain. She cannot inform you if she is hungry or tired. She is 16 years old. She has NO communication abilities. She does not come close to the communication of Washoe the signing chimp. This is not a reflection on her intelligence, knowledge or awareness, it is the statement that we do not know nor can we tell what she does possess. Note that without the fantastic technologies he uses to communicate, Stephen Hawking would not be able to communicate either.
Those around her, teachers, doctors, friends, family … all agree that she has an understanding of the world … and all believe that it is entirely possible that she has the understanding of at least a six year old. She understands. We know she sees, hears, smells, and reacts. It is possible she has the mind of a 16 year old, but most likely a six or seven year old.
Yet she cannot get anything out. Cannot speak, point, sign, purposely and repeatedly look in a direction, etc. Nada. Zip.
So why does everyone come up to her and ask “How are you today?”
Isn’t that cruel? To hear and understand a question, and be screaming the answer inside … ?
“Actually, things suck, thank you. How are you?”
I think people are just showing a social norm with their question. What is/should be the social norm for addressing a non-verbal person?
Oft recommended is to talk to them as if they understand, knowing full well they cannot respond verbally. I don’t think cruelty is intended.
I totally and completely get this.
My twin sister has Cerebral Palsy. She is verbal and mobile, thanks to many talented doctors over the course of years from Alfred I. DuPont Hospital in DE. I can assure you that it is not meant to be cruel. You have a very valid point, however. My sister once told me about how GROWN people would pull their kids away from my sister (whom was also only a child) away from her. As though they could catch it! She said all she wanted to do was explain what she had and try to get people to be less cruel, not to her but to others. Maybe if more people would respond to disabled, homeless (the list goes on and on) people….This world would be a far better place.
Just came across your blog via an Aol article. Have you read “Stuck in Neutral” by Terry Trueman? Based on the author’s son, and narrated by a character who is disabled similarly to the author’s son, perhaps this book might resonate with you. I was born physically disabled, along with some cogntive issues, and this blog certainly resonates with me.
Of course, I cannot know for sure, but I think that Pearlsky would not say that things sucked and she was so unhappy with her life. I think she is happy to have you for her father that loves and cares so much for her. I think she would be thankful to be alive even if trapped in her body. I take care of a kid about her age that is fully cognizant and verbal but unable to move a muscle. He is fully physically dependent but full of life and the joy of life. He would not wish to be dead instead. I think your daughter has more joy of life than you can imagine. I believe she is not offended that people ask how she is doing. I think she answers them in her head and appreciates them asking. I do understand why you write as you do and that you share the things you need to get off your chest and I think that is a great thing to do. It does not really matter what I think, actually, but I wanted to share another perspective.
Hello, every time i used to check webpage posts here in
the early hours in the dawn, since i enjoy to learn
more and more.
Hi! Do you know if they make any plugins to help with SEO?
I’m trying to get my blog to rank for some targeted keywords but I’m not seeing very good gains.
If you know of any please share. Thanks!