“I say there is no darkness but ignorance.” ~William Shakespeare
Sorry, Billy, I disagree. I am more of an “ignorance is bliss” kind of guy. (From Thomas Gray‘s poem, Ode on a Distant Prospect of Eton College (1742): “Where ignorance is bliss, ’tis folly to be wise.”)
I’m sitting here, minding my own business and contemplating the failure of the LHC to cause a black hole sucking in the earth and instantly annihilating all life as we know it, you know, a typical day, but I digress, and I am listening to the radio, not streaming, mind you, but a real radio thing, and not that satellite thing, and it happens to be NPR, which, I know, shows my age, but I happen to catch the beginning of This American Life. Talk about depressing. Or thought provoking.
Host Ira Glass talks with a bunch of special ed students. By and large, they thought of themselves as regular kids—until each experienced a shocking moment of revelation when they discovered that they were not the same as other kids, and that the other kids already knew that…and had known for a long time.
Give this a listen, even just the prologue, since that is all I needed to hear … Listen Here. (The transcript is here if you don’t want to listen, but listen, it is much more powerful.)
I wish I knew if Pearlsky knows. Does she know she is … ummmm … severely disabled? Does she thinks she’s a retard?
My dad was a hunter, and he taught hunter safety courses, etc. Not a wacko, I think he was successful maybe twice! He said something once when I was very young that I remember to this day, and think about often. The problem is, I do not remember the context. It may have been while discussing that if you wound an animal you are obligated to follow and find it, and not allow it to suffer. Anyway, the quote that has stuck with me is “The deer will run and keep going, for it does not know that it is going to die.” I don’t know if it is true, supposedly elephants can sense their demise, but it would be nice to not know that we were going to die at some point.
Non sequitur? No. I don’t want Pearlsky to know that she is so severely disabled. But yes, I want Pearlsky to know that she is so severely disabled. She has to know she is different, no? She sees everyone else walking, does she wonder why she doesn’t? Does she wonder why she can’t talk? Many of us believe she has a high level of understanding of the world around her, but does she know she is going to die? Does she know she is … fucked up?
Does she know that I am?
So, nu, did I miss someone’s post on Push Girls?
I believe that “our children” have a better more instinctual understanding than we do. I think in many ways my severly disabled daughter ANA came to not only understand but accept her fate before I did. When she was about 2 1/2 her baby sister lifted her head and Ana squealed and kept getting excited looking at me then at the baby and in my heart I felt she understood her own limitations And showed joy for her baby sister. Not only that but I at the time didn’t show joy over her sisters accomplishments in front of Ana (I saved that for private) I felt she wanted me too share the joy! Besides SD aren’t we all a bit F’D up?!?!?
I think often about whether Sophie “knows” that something is wrong with her. I wonder if every time she has a seizure, it’s all erased or whether the seizures have done irreparable damage to her short term memory. I think about these things all the time. Sometimes, too, I believe her to be happy unto herself, if that makes any sense. She is who she is.
So eerily strange that this would be your post.
Tonight, we were sitting around the dinner table discussing what most families talk about I am sure … a light conversation about disability. Specifically about ‘levels’ of disability. One of our daughters is going to grad school for her Masters in Special Education. She was talking to my dad about the children she would be teaching and that she was going to focus on the ‘moderate to severe’. My dad asks a few questions. We look up the definitions of the different categories and find that Zoey falls, by the criteria we were looking at, in the ‘profound’ category.
In true fashion of our family, we make a few of our our dark humored jokes and we look over at Zoey in her seat and … she is starting to cry. Big lip, serious face, starting to cry. Obviously bothered. Obvious change in demeanor. And my husband looks at me, with tears in his eyes and says … “She knows.”
In which case, she most definitely knows how fucked up I am.
So I have that going for me. Which is nice.
She probably knows on some level.
I know I’m more aware of what’s going on around me than often anyone else with me can figure out.
There is a bell curve, for mental issues and for physical issues. I don’t know anything about the curve as it relates to physical disabilities, so I won’t talk about that.
The bell curve of mental abilities/disabilities has two ends. Some people are falling off of the edges of this curve, on both ends. The ones in the bottom 1% often don’t know that they are falling off the end of the curve, but neither do the ones in the top 1%.
The ones in the top 1% often grow up knowing that there’s something very wrong but they don’t know what it is. They have difficulty reading others, their facial expressions as well as their behavior. They are often quite lousy in dealing with others in a social setting. Many became virtual hermits.
But they think they are normal. And they worry that they are in a world of remarkably stupid people and they don’t know how to find other “normal” people. They cannot understand why they are being taught to read. For them, reading is like breathing, and no one is being taught how to breathe. For them, reading is something that comes with being born. The same is true of basic arithmetic. They don’t understand it when other people don’t “get it.”
I remember the day I was called to the principle’s office after some silly test in the ninth grade, to be told that I’d scored higher than anyone had ever done in this school. My reaction was to tell the principle that this was no big deal because everyone else here was remarkably stupid and that I was just “normal.”
This was not well received and shortly after, I was permanently expelled. Before I was shown the door, I had a brief moment alone in the office where all the student records were kept, and I took this opportunity to find my records and took them with me. I later tossed them into the trash. Damn it, I was just an ordinary person doing what I was told to do.
Somehow, I was persuaded to take the test for Mensa. Again, I was being asked all these stupid questions. I thought people were laughing at me, after they gave me this stupid test and I said that this wasn’t nice, to make me do a test for something that everyone could do. I didn’t know why I was being picked on.
Some years later, I understood that I was not normal. I’d heard that drinking a lot of booze destroyed brain cells. I spent many years trying to destroy enough brain cells so that I could be normal. It never happened.
Falling off of either end of the curve is not fun. No one understands.
Haven’t been able to get on here for ages – have to wait til I can use my son’s Mac because my smarter-than-I-am phone won’t let me post for some reason. It keeps saying “Perhaps your post was too short.” Not likely.
Anyway, this post struck a nerve with me, as I’m sure it would with any parent of a disabled child. Because I was also a special ed teacher, I have a myriad of anecdotal tales pertaining to this. But for some reason, the post prompted a different, though related personal…well, epiphany, if you will. Until my daughter was about 5, there were 2 separate children – the one that was, and the one that “should have/could have been”. Both were very real to me. I often pictured (and mourned) the beautiful blonde child that bounced in the door after her 2 older siblings and was part of the Gang of Three, as we called the cousins born exactly one month apart from each other in May, June, and July. After Carrie turned 2 and it was clear nothing was going to change, I literally couldn’t be around the other 2 because it was too painful. Anyway, there was no earth-shaking realization, no moment in time; nothing like that. I just became aware one day that I had stopped putting all kids (now 4 of them in 5 years) to bed for naps, then crawling in my own bed and crying for 2 hours, and had resumed going to family gatherings. Carrie is 23 now and I can’t imagine her being anyone but who she is – basically an eternal Terrible Two year old. Real pain in the butt sometimes – but just when I think I’d like to clock her, she has a seizure and I want to scream, “Get up, Carrie! Hit me, kick me, split my lip open, just stop seizing!” Oi! Her father “can’t bear to be around her” because “it is just too sad”. Eff that – for who?! Other than when she’s told “No”, she’s the happiest of campers. I love this blog. Kind of like belonging to a really exclusive club – that no one wants to join. 😀
At a very profoundly deep cellular level, some would call spiritual level, our children know they are perfect; in tune with all that is sacred and holy. They lose that innocence when others communicate they are not Ok…a glance, a stare, a derogatory word, a hesitancy, an indifference, an unkind, ungentle touch…the OTHER communicates they are different. Of course, we also communicate “you’re not ok” to many others without apparent disabilities … it is easy to make people feel less than what they are and to make ourselves feel more than what we are. It is so easy….
I think my daughter understands that she is different, but I truly believes she thinks her different is the right and better different.
She can only see our of one eye and only then if the object she is looking at is about an inch away. When she wants me to look at something, she holds it an inch away from my eye with this look on her face that says, “you idiot, if you want to really see it, you have to look up close.”
More often than not she has a looked of patient tolerance on her smirking face as if to say, “You still just don’t get how wonderful it is to be different like me. Just keep trying, you will get it one of these days.”
And I just love it when a “professional” (e.g. an educator) says something like, “poor thing” when referring to her. My daughter will turn away, try to stifle a laugh, and sign “bitch.”
Yea, she gets it….
Love it! Sometimes Carrie will tell us something, ask for something, etc., and it takes a while for her caregiver and I to get it. She looks at us like she’s thinking, “Geez – remind me – which one of us retarded here?”
Just thought this was funny:
http://hasthelargehadroncolliderdestroyedtheworldyet.com/
Either way, the end result is frustrating. If my daughter Camryn KNOWS that she is severely disabled and that needs her parents for everything in her life, then she knows how totally and utterly crazy, irritated and annoyed she make me and her father when she whines and screams and yells for no apparent reason. She has this need for absolute solitary with the exception of her father and the 13 year video run of Blue’s Clues, 24/7.
Then again, if she is totally oblivious to her situation, then she is completely unaware that her fire siren-like whining is going to drive me straight into a mental institution.
It’s a lose lose situation….but it’s ours. 🙂
Feel your pain, Judy, feel your pain. Without a gallows sense of humor, we’d be lost. : )
Thanks so much for this SD, it took me a good while to find this again as I recalled it in the far reaches of my memory, and I wanted to get the URL for the piece on This American Life to contribute to a discussion on FB about older Autistic adults losing interest in life. The story of Vincent in Act 3 is very uplifting and was a bit of an epiphany to me 🙂
Glad I helped! Send some of your FB people this way, would love to see what they say.