Monday, October 10, 2011

Write a happy song, do not end up like your father

When I was a child I was diagnosed with a host of learning disorders and was to move into a ‘short bus’ school for retards. RETARDED. That is the word that was used. I was RETARDED in my development because I could not read like them, or write like them. (Yes, the word is deliberate, because it was a label, it was written, it was said, it was an identity, it was all that I was).

I escaped that, in a province where the sterilization program for RETARDED girls and native women was still going on. I escaped because my father was transferred to Surrey, BC and they didn’t have enough room in the first grade/kindergartners’ room so I was put in with the second graders. And because I had Dabrowski's Sensual Overexcitabilities including but not limited to hyperacusis (hypersensitivity of sound, to the point of extreme pain), I just did ALL the work on ALL the blackboards, because mixing with kids playing after doing classwork in the back was painful. Mozart had it, as he was so sensitive, so to 'fix Mozart' his father paid someone to sneak up on his very young child and blow a horn. Mozart’s face drained of blood and he passed out of pain. Texture, smell, they are things which are turned on. It turns out that neuro-diversity affects not just what can be done in the head, or processed, but advanced processing of data includes ALL data (like the senses of the body: sound, texture). So with all the same learning disorders, I was bundled into GIFTED (they held some of the pages up to a mirror and realized I was writing just fine, just not the way they wanted). And yes, I was unable to 'adjust' to regular kindergarden or first grade because children are LOUD and I can't understand what the teacher says. Thus I was 'unable to adjust to normal schooling, unable to do work assigned, unable to function' conclusion: mental retardation. Except I was able to do ALL the classwork including several grades above me when left alone. Conclusion: Gifted.

So what? Well, it demonstrates that what is assumed is not always the truth. But then, this world isn’t really big on truth, but it is big on perception. There are things which are unstated but supposed to be ‘understood’ – one I remember which caused quite a lot of physical ‘instruction’ (this is what happens when you get hit, you learn…things, perhaps not what they person wants, but you learn) was not to stare at people. I could not look at someone directly for more than 1 second. Three seconds was immediate physical punishment. Things I was ‘supposed’ to know.

As a human, both legally and morally, there is absolutely no difference between someone who is cared for and the person doing the caring. One is not superior, nor inferior. In the same way, someone with an IQ of 190 and someone with an IQ of 70 are EQUAL. The law states that, in the human rights charter of Canada. But socially it isn’t applied. In the same way studies have shown that resume’s with ‘black’ names like Lakisha will NOT get shortlisted while the same resume from Emily will (Oft repeated study starting with MIT and university of chicago’s mailing 5,000 resumes) – Emily will get shortlisted 1 out of 9 resumes, while Lakisha will get shortlisted 1 out of 17. This is constant regardless of position, from entry level to manager, to president of company. Overweight individuals in shortlists with the same qualifications are NOT chosen at 9 to 1, and those in wheelchairs, dozens to one.

I have genetic abnormalities, I was born with them. I am a 47 chromosome. Why is it that one person with extra chromosomes is born with downs and one is born with mosiac? Both have connective tissue and heart disorders. In case you did not know mosiac is one of the chromosomal intersex conditions, some of which are visible at birth. Intersex, or DSD really boil down to: can you produce children? But in society it is more than that, it is: can you conform (in terms of gender)? Yes, and No.

Dabrowski studied sensitivity and how it turned out that some babies cried faster due to pee, found it painful to have the seam in socks anywhere except at the end of the toes. Dabrowski found that some children could have all these, as well as what he labelled as extreme empathy. This is also the same style of extreme empathy found in females with autism in a German study. He found that these individuals were more likely to be AWARE, and thus be gifted – the diversity allows for understanding, allows for creation, if they are helped to stop living in hell, a sensual hell. Except that my father believed, like the lab rats he worked on, that his children were all the same. And the religion group made him the teacher of discipline, and so he taught thousands that all children are the same, that they can be hit and it will not hurt them starting at six weeks. And that they cry but not to go to them, starting at four to six months.

I have this split world, this literal aspect of two, both in mirror images. I was, at some point, perhaps only as some split cells, two. I was two and now I am one. Instead of twins, I exist. I am both. I have dyslexia, I have what is now called autism, I was RETARDED and I was GIFTED. I was determined both, by exam of the same materials, by advice of doctors. I was to be in a school which taught nothing but I ended up taking multiple grades at the same time and reading Homer’s Iliad and Odyssey. I am both. And I am equal.

I am genetically different, I am altered not because I needed to be, but because others felt uncomfortable about my existing. Decisions made at birth, operations after. I am not the typical female, yet I am female. Many females don’t know they are intersex until they try to have children (and can't without help). So what? A doctor stands over you as a baby and decides if you are a boy or a girl because he feels uncomfortable? I was left in the hospital, no one to rescue me. My mother was called by the hospital after leaving without me and not coming back.... Mosiac is not abnormal, I think we, in our social inability to expand what normal includes, is abnormal. I am not Kennedy Syndrome, or Williams, or a female Klinefelter, though there are females with Klinefelter, nor Turners, but Mosiac.

I learned to be loved and I learned fear and pain. I find the world painful, I find the world wonderful. Sound is pain, touch is pain, smell is challenging, empathy is pain and yet it is a state of being me. I am unfinished, I am finished. I am atypical for a human, but I am within the limits of diversity. I am a success, I am a failure. And there is no answer to this

I have no peace. I create because I will not cry, because I do not believe that I am alone. You are not alone.

I die because I am slowly unable to sustain the basic function of heart, lungs and circulatory system. I am socially discriminated because I am not seen as typical, not seen as disabled, not a recognizable disease and not recognizable in how I die. I exercise on Thursday, I exercised on Saturday. I go naked for my body is not my body anymore, as my heart failing changes it; my cells breaking down change it. I stand, to try and change, and they worker they sent me is 4 foot 8 or 9 inches. We are a group, one wheelchair, one cane, from 4’9” to 6’3”, all at different paces, we are typical we are not the same.

This is living.

Mika, a Lebanese singer moved to London, is a recent hit. He was used, he was taught from a young age, his first piano composition at age 6 or 7 was titled ANGER. This is not happiness. I mimic someone, telling my grandmother ‘I will kill you, I will murder you, I will chop you with an axe, are you listening to me?!!” I natter on. I am aged three or four, and would record these tapes in the basement. I seemed to think that saying I would kill, I would chop them up was how people asked if the other person was paying attention. Who did I hear say that? How does a three year old know the word ‘murder’?

Mika, who was recently knighted in France, writes Elle Me Dit. Which means: She Told me.
She told me
Write a happy song
Not a depressing song
A song that everyone loves
She told me
You will become a millionaire
You will be proud
Do not end up like your father

She told me
Don't shut yourself in your bedroom
Go ahead shake yourself and dance
Tell me what your problem is
She told me
Why aren't you more suave
You're stoned or broken or worn
You'll end up like your brother
She told me
She told me, it's your life
Do what you want, oh well
One day you'll understand
One day you'll want it
She told me, you're a zero
Get out of your bubble a little
You don't do anything important
Looks like you like it like that

The chorus is her shouting: “Why are you wasting your life?”

"She told me something that I love, she told me to dance."

While I live, I am. Who is it that sends you? I am that I am: so let’s dance!

15 comments:

Linda McClung said...

A very thoughtful blog Beth. It is amazing how many contradictions or mirrors there are in life.

I am really glad they recognized that you were gifted and not the other way around. I don't know of anyone smarter or wiser than you.

I really feel for young Beth who was overstimulated by sight, sound, touch, taste and smell. I am amazed by how well you have adapted to society despite its abrasiveness.

Elizabeth McClung said...

I think in many ways, I am both, I do have learning impairments but I am also gifted, which isn't actually that uncommon. I think the desire to label or push people into a box, into a single catagory is one which continues to frustrate others about 'difficult' people like me, whether as a child or now. Hospice is not any better suited for overstimulation - and add in pain for an extra dollop. I dunno, but figuring out is what we do, yes?

Noisyworld said...

I don't know how you got through your education Beth, I had to drop out of school because the ringing bells and yelling children caused me so much pain I couldn't learn.
You've lived one heck of a life and I'm glad to be reading your thoughts and of your experiences(though I wish you hadn't had to have written many of them) :)
I watched an interesting documentary on the BBC tonight about DSD, some good experiences some bad. I really don't understand how the medical community comes to the decisions it does- but you know that better than most :/

Valerya said...

You're just amazing.
I found your blog completely by mistake, while googling "girl goth bored" or something for my blog. What a funny coincidence.

I have fybromialgya, which is also a kind of hyper-sensitivity, but is not even close to your state. You're so inspiring!!
You must be a really brave person, in order to simply not give-up...

wendryn said...

Overstimulation is really hard to deal with. I can relate, a little - when I get tired, everything is too much and sounds hurt me, too. It's hard to explain to people, though.

You are definitely on the gifted end - glad you figured that out!

Contradictions keep life interesting?

cheryl g said...

Excuse me if this is a stupid question but can you use one stimulus to drown out the other hyper-stimulation? For example, would it work to have a scent or sound or touch which brings you pleasure rather than pain and use that to overload the nerves so the unpleasant stimuli can't get through?

I have been thinking about what my brother is like and I am beginning to understand some of his habits better now.

I have long been uncomfortable with an education system which expects all children to learn in the same exact way and is quick to label those who don't as "slow".

My 3rd grade teacher divided my class room up in groups based on how we learned - whether we were more geared to auditory or visual communication and learning and then taught each group accordingly. She didn't label us she just adjusted her methods to meet each student's individual way of learning. Her students consistently did better than the other 3rd grade classes and yet the school systems still teach using one method for every kid.

What you have accomplished and continue to accomplish in spite of the many hurdles you face leaves me in awe.

cheryl g said...

Excuse me if this is a stupid question but can you use one stimulus to drown out the other hyper-stimulation? For example, would it work to have a scent or sound or touch which brings you pleasure rather than pain and use that to overload the nerves so the unpleasant stimuli can't get through?

I have been thinking about what my brother is like and I am beginning to understand some of his habits better now.

I have long been uncomfortable with an education system which expects all children to learn in the same exact way and is quick to label those who don't as "slow".

My 3rd grade teacher divided my class room up in groups based on how we learned - whether we were more geared to auditory or visual communication and learning and then taught each group accordingly. She didn't label us she just adjusted her methods to meet each student's individual way of learning. Her students consistently did better than the other 3rd grade classes and yet the school systems still teach using one method for every kid.

What you have accomplished and continue to accomplish in spite of the many hurdles you face leaves me in awe.

Neil said...

Hmmm. My youngest son wanted to be in the school band, and ended up in the percussion section, but cringed at the noise level. He persisted for two years before giving it up. He was also in the top 25% in Canada last year in a national math exam. But he can NOT write an essay that requires the application or explanation of feelings. He's worthy of being the offspring of Commander Data and Saavik...

But your post has helped me understand him a little more. I also have more hope for him (for sometimes I wonder if he will ever be able to leave home).

I kinda wish I could go back in time and rescue you from your family. But then you wouldn't be who you are today - I'm not saying your childhood experiences were proper, but they did add up to create the Beth we all love.

If your parents had been the sort to praise a child for doing well, and encourage one who didn't, with no put-downs and spankings, would you have turned out the same? I think not; yet I rather wish you could have enjoyed your childhood much more than you did.

Thanks for being the incredible person you are, Beth!

Love and zen hugs,
Neil

Neil said...

Raccoon: if you still have the same email address you used three years ago to send me your holiday photos, could you please check your email? I have a question for you. Thanks!

And thanks for allowing the interruption, Beth!
More Hugs!
Neil

GirlWithTheCane said...

You are you - no more, no less. Which should be enough for anybody.

I'm working on an email for you...craziness going on here this week, including questioning why the stroke support group around here works the way it does...you'd have been proud of me...:P

Your experience with the school system...not as rare as you'd think or hope, unfortunately...and it's amazing, how many adults there are, like yourself, who somehow, amazingly, compensated for lack of recognition of how they learn and got through those those school years anyway. It's really beyond me how you did it...how you continue to do it, in this noisy world...

Elizabeth McClung said...

Neil: Do you think that if I was praised or had a father who didn't think that having a son fuck a daughter was only important if anyone found out because.....they wouldn't think he was in control of every movement of each child? Does having a mother who tells you that you weren't wanted, and that she had left you, tell me as a child, telling me to shut up or be shut up. I resembled the kids brought out of the Koresh Compound. I would have killed for my father at 8, and WAS used as a human shield. It was 'RIGHT'. Does that fact that he refused for 20 years to acknowledge that my obedience was torturing me physically just to eat meals as ordered, does that make me what I am? Or like now, does the pain, bourne for years without a doctor, without help of any kind medically, make any human being a better person. Can the 'Better Beth' be achieved in a bowl of pain, poison and torture? - no.

Thanks to my father, I will never be happy, just simply happy. When asked if I was her daughter, the one written up in the Globe and Mail my mother said no - I know as she had demanded I hide, and was face down in the car foot rests behind her. It has helped my desire to be free. But no, 25 years of physical, sexual and other abuse is never a 'good' thing.

Raccoon said...

Maybe how you were brought up wasn't a "good" way, but I think what Neil was getting at is that you wouldn't be we know. Kind of – sort of – gets into the whole "nature vs. nurture" argument. The way you were brought up directly influences your (actions/reactions/decisions), even if it is to (rebel/reject)your upbringing.

Would you have tried so hard, in school or sports, if you weren't (looking for acceptance/fighting against rejection)?

Rhetorical. That starts getting into Chaos theory and science fiction alternate realities…

"If you could go into your past, what would you change, if you could?"

While there are things that I might have done differently at the time, I wouldn't change anything. It would change who I am today…

"Back to the Future" and "Sliders" might be examples. "Sliding Doors," too.

Neil said...

Beth, dear, I understand that you had a rotten family as a child. If I could go back and stop the abuse you endured, I certainly would, even if it meant I'd never meet you online. (Now there's a paradox!)


However, Raccoon is right; it's all rhetoric, since it's not something we can test.

Further, I apologize for musing about your past and whether it changed who you are now. It wasn't meant to bring up bad memories, or cause you upset. As GirlWithACane said, you are who you are. And that's the person I love and respect.

Now, I am quite curious to know if you can answer Cheryl's question: can you use a pleasant overstimulation to counter an unpleasant one? I would guess not, myself, based on my migraine experiences: at some point, ALL stimulation becomes negative. But I'd love to hear your response, if you're willing.

Love and zen hugs,
Neil

Elizabeth McClung said...

Raccoon: Looking back, and having a hard look back, I wouldn't change the choices I made. There is understanding or wisdom I wish I had earlier though.

Would I be the same person. Yes. First, I have an enormous amount of garbarge chromosomes, as most people don't get 3 chronic and 1 terminal disease by the early 30's. But I set myself to do what was hard not because I needed the love I did not recived, or to impress or get approval, but because it was hard and that was what I loved. I tried to get into teen basketball at 11, petitioning up the chain, doing the same at 12. I came in every day for an hour in the morning for extra practice, I stayed late, I was on three teams and at a higher level I was simply not good enough - some of that was bad coaching (when you move from 30 points a game to 2 and have the same players...), and some of that was just puberty and getting taller and scoliocis. But did it change me being there for 900+ mornings, always biking, always knowing that I would never been identified this way, be the star, even be seen by my parents? No.

So if I had been in a supportive environment or a competitive environment would I have bowed to pressure to be different? Well, they said after the operations to be very, very careful with my knees and not do anything that could injure them as they couldn't be operated on them again and I immediately started long distance running, first marathons, then trail running then ultramarthons. Some races, I ran the whole race the day before, if I was coming off the flu because I wanted to know I could do it the next day. How would that have changed? I could have had parents that said, 'No you can't do..." - well considering that I went homeless rather than ask for help, with an able body, that wouldn't change either. Only now, in pain, isolated and alone, would it be nice to have a family and upbringing that wasn't from some goth horror story. When people run away because a building is on fire, I run towards it, same for shooting, same for earthquakes, - how does that change? There was no nurture, I am the child of Skinner.

Kate J said...

What you went through - and are still going through - is heartbreaking. No other word for it. I wonder, even with all the improved 'understanding' and 'support' available in schools for kids these days, whether things have improved? I hope so... but think probably not. How many other kids will have to suffer that you did, those feelings of rejection and fear?

To have emerged from all that just shows what a strong person you really are. Those early life experiences would have simply broken most people.

Thank you for telling us about it, which can't have been easy.

With love and peace