Sunday Something to think about

"How wonderful it is that nobody need wait a single moment before starting to improve the world."

~ Anne Frank

Disability Carnival #31 is up and it's Super!!!

Emma , over at Writings of a Wheelchair Princess, has done a great job organizing this very interesting carnival with one of the best themes ever - Superman.

Thanks Emma!

Here is an excerpt I really love that I have cut and pasted from Emma's post. (Emma I hope you don't mind, but I want a t-shirt that says this too!). Thanks to Lisa for penning it.

It’s something that I wrote about earlier this week in this entry. And it’s something that Lisa wrote about in Can I Just Have This Made Into a T Shirt and Call It a Day? In saying the following, she totally blows me away and says something I’ve wished to say, something I’ve tried to say before.

"If you are going to call me remarkable, amazing, inspiring, or whatever other adjectives you want to use to put me on a pedestal…it better not be because I am disabled, or because I partner with someone who is disabled. It better be because I have won an Olympic Gold Medal or a Nobel Peace Prize or a Pulitzer or because I have brokered a treaty between waring nations or because I can tie a cherry stem with my tongue or because I have actually DONE something remarkable. And “coping” with disability DOES NOT COUNT. I didn’t do anything to be disabled, I was given this gift. "

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The next carnival will be hosted by Shiloh over at Sunny Dreamer. It’s theme is “Standing Outside The Fire”. It’s on the 28th and submissions are due by the 25th. If you prefer not to use the blog carnival form, submissions can be e-mailed to celtic_me2000@yahoo.com

Live to the point of tears. – Camus

Alternative title to this post:

Writers and Writing / Artists and Art and Bloggiddy Blog Blog

Origins, Creativity and Labels

I have been thinking allot about creativity. I guess you could say it has been a lifelong study. I was first labeled as the creative one when I was very little. I am the middle of two sisters very close in age, and spin that as I have, at this point I am over it. Not that I have lost that vaunted family place of being the middle, disregarded, misfit, malcontent of the family. Nope, all that is still alive and well in my family dynamic no matter what I do or how I transform. But I am bored of that label – the middle child thing. It’s not something I take on anymore as a convenient modus operandi for my identity. I can’t claim it any more as a reason to not be as great as I could be, or to let it stop me from doing things, nor be my impetus for procrastination. Everyone has a cross to bear like that. The oldest and youngest have them too. And if you are one of those people who think birth order doesn’t affect you, then you are probably the youngest or the golden child of your family. So once you develop a little empathy for others in another lifetime you might begin to understand how wrong you are. Being the middle child thing is just the particular flavor of one of my challenges in life, and, like I said, best to move on to more interesting things.

Because of having been labeled the artist of the family from early on I began to try to understand what it meant. As a child I thought everyone was like me seeing the possibility in sun on blades of grass, day dreaming pictures in their head attached to stories. I think that is the self-absorbed innocence of the child’s perspective to assume all the amazing revelations they are having about the world are the same as anyone else’s. And in fact, I think in the very young, under the age of say 6 creativity is rampant with all that explosive brain growth, cellular energy and closeness to what came before they reincarnated. The really little ones are wired into the source of all creativity, whatever the heck it’s called, as it is called as many things as it can manifest. I have noticed that truly creative people seem retain some of that wonder into adulthood. They have a youthfulness about them that tells you they still let their imagination steer the boat though they have probably learned to hide it from everyone else.

Of course when I was little I liked the label – for the most part. It was a way to stand out. The down side was, in my family at least; it was a bit of a sideshow. People liked it that I painted and wrote stories and kept a journal that I very fiercely defended as NOT being a diary. But at the same time my parents truly worried and often communicated to me that it was no way to make a living – art that is. And for them as parents, a teacher and an electrical engineer, that was the end goal for their children– self-sufficiency which really meant making money. Tell that to Jo Rowling or Neil Gaiman or J.R.R.Tolkien or George Lucas or Mark Twain and on and on.

As a result of those mixed messages, I grew up loving and hating my own creativity. It was an intricate, important part of myself I was always trying to navigate and channel in more appropriate directions, to places where you could get paid. That’s why I attained a higher degree in organizational psychology. It’s an incredibly creative field to work in and it pays and is therefore respectable and I am good at it and actually do love it. The sideshow became my writing and painting the later of which I neglected for the last 15 years. So instead of nurturing and loving the creative part of me – the really creative part that does oil paintings and invents things - I tried to alternatively channel it elsewhere like the companies I work for and at other times tried to destroy it altogether. I put all my pain there in that creative self and gave away or destroyed many of my drawings and paintings because it was hard to remember the bliss of art school where people cared if I painted or not. Where I got full license to create and paint. Where there were conversations about it all from the luxuriousness of grinding your own pigments to the fight around the value of postmodernism. I have tried for a very long time to forget how much I loved it. Unfortunately as many a painter knows you can’t destroy that part of yourself, you can only put it off until it bunches up inside you like a huge burning fire in your solar plexus that makes you unhappy until you can let it out. The creative writing was easier to maintain because of journaling and the ease of use – pen and paper and away you go. Hence I have been journaling since I was four years old. Journaling has always been an important way to stay balanced.

But actually doing something with writing, like say publishing a book, is complicated too in the purely creative realm, especially if you have had the misfortune to meet writing snobs. Yep, people who think that you have to have allot of pain to write, or a degree in writing, or do other things like paint, well then you can’t be a very serious writer, right? Though I must point out that many a great author have drawn very convincing sketches and created images of their characters and story points.

Of course there are art snobs too. I am one though I do subscribe to the idea that anyone can make art and it’s all good. My snobbery is born of artist’s block. When I am not painting and I see other people’s paintings I am really critical because I resent not getting to paint too. How messed up is that? Sometimes creative people are really competitive with each other and don’t support each other very well. Like when I would see people painting and feel jealous like they were holding me back from my own work… It’s part of the overall mixed message thing you get as an artist as well as dealing with all that awfully keen perception of the world and inner worlds that is going on whether you are nice enough to give yourself an outlet for it or not. It is probably that combination of tensions that feeds many an amazing story or work of art. Spiritually, my challenge to overcome all my restraints and create is a test to see if I can hang with the gifts I was born with.

So instead of feeling bad about other people painting I started painting again, thanks to Dave who had the insight and kindness to get me a great easel and make a space for me to work in our house and Troy who made me custom oil paints and hung out one day in my studio until I started to make some progress. You can’t get much better support than that.



Bloggers and Blogging

That leads me to bloggers. Are we all just pent up writers looking for an outlet? Or is it something deeper about needing to have a voice because you feel that no one is listening? Are all blogs lone shots in the dark fired by people trying to be heard? (Incidentally, does that mean if you have your comments turned off that you are essentially talking to yourself…?) Or maybe bloggers have got it write (da da da!). Maybe they are the writers who are not blocked, who are writing all the time. Many of them have turned their blogs into books like Biz Stone, Heather Armstrong and many others. So who comes first the writer or the blogger?

I started this blog because I needed an outlet. I found myself out of the spotlight, home with Ellie, trying to figure out this crazy life with a kid with CP and multiple disabilities, fighting for her and working with her constantly. When she is home she hardly ever plays on her own – and I mean like if you get 10 minutes to draw her meds up or make her dinner without an argument you are lucky. She’s the type of kid whose mind is always on fire and wants to be doing something all the time (she is our daughter after all). I love that about her, but factor in the lack of gross motor skills and you can see why Mama becomes needed hands and legs. As a result there is no down time – it’s all go. I want to work with her has much as possible and much as she can handle to help her develop and grow and it’s working so I happily keep on. But in all that, like all parents, I, the me who is Kathryn, not just Ellie’s mom, got a little lost and needed to have a conversation to process all I was learning as well as let some of that fiery creativity out. The overly socially conscious part of me that always needs to justify the time expenditure of any creative activity thought it would be of use to share what I am learning with other parents who may be in similar situations.

The payback, however, has been enormous. Blogging has allowed people who don’t know me, don’t have a hundred preconceived notions of me or judgments of me to comment on my writing and my thoughts and my ideas. That has been really wonderful and freeing. Blogging is certainly a new trend in allowing people to express creativity. There is an element of randomness to the feedback I get, because I never know who is reading, that I enjoy.

For the most part I have found it a friendly, interesting, and open outlet. Also I have found some wonderful writers in return. I won’t name them because if I forget one or two I will feel bad. The other day my father even made an off-handed comment that I have always been a good writer. He just said it like it was a given for him. I was shocked and thought maybe my blogging has helped to reshape my world in the most fantastical time shift Bill Pullman kinda way.

At the end of the day, however, creative people need support because it’s a risky thing to do – spend your time on creative endeavors like fiction writing or fine arts like painting or sculpting or poetry. For every Jo Rowling there are a million me’s out here, writing into the great vortex that is the blogosphere or the even darker abyss of the personal journal kept in-between the mattress and box spring or slowly slogging away at an oil painting in a chilly 5X9 front room. To all my readers out there who have commented on my writing, blog, and ideas, good or bad, a very heartfelt thanks to you. Thanks as well for all your kind wishes and support for my warrior princess, Miss Ellie. And to those of you that may not understand my need to blog, well, and I say this gently, I really don’t care what you think. Because if it makes you laugh or sneer or roll your eyes in the process you are unleashing bits of your own creativity which is a great way of saying my blog has at the very least made you think.

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Image descriptions:

first image is an original oil painting by me - all rights reserved - of a big tree and green background and madonna and child but all unfinished as of yet

second image is of my studio with easle to the left and palatte and shelves under a window

The Goal to Be Normal

On the surface this goal generally means things like these:

to walk
to talk
to be entirely self sufficient - including feeding oneself, toiletting oneself, and in adulthood taking care of oneself - though that last one has all sorts of variations
to do the same things most of the other people you see on the street do like:
to go to the same school as your neighbor's kids
to progress through school at the proper year
to be able to run, crawl, spin, turn and all other wonder of gross motor skills
to be able to write and draw and manipulate things with the fingers - fine motor skills
And psychologically:
to love and be loved
to not be a sociopath and harm others

Under the surface the goal to be normal means these things:

to be worthy and valued by society (ever hear that phrase to be a contibuting member of society?)
to be loveable
to be understandable
to be happy
to be valued (kind of an add on to the society one)
to be worth medical care, educational investment, and society's tolerance in letting you safetly exist
All in all to be considered a member of the social group with a voice to be heard

So what is this thing called normal? Why do we try so hard to define it so very narrowly?

I met with a group of parents this weekend who all have a kid in Ellie's class. All with special needs. All outside these narrow confines of normal. All great parents who have stood by their kids and had to fight and fight and fight and fight some more in battles as varied as a box of Bertie Bott's Every Flavor Beans. So many battles.

I have also been thinking about the goals for Ellie, especially getting her to walk. I am a bit perplexed by it. On the one hand wanting to give her every opportunity so that if she can she can be upright like everyone else...

On the other hand I don't want the goal to be for her to walk if it twists her spine up and crushes her organs in the process. That is not a dream either. I have met a few parents and their scoliosis ridden children who have paid this high and painful price to achieve something close to normal. Parents proud and thrilled that their kid walks. Stories of hours in the stander. Having to leave the room because they couldn't stand the screams from their kid as their spine shrunk onto itself because of muscles to weak to keep them up and they twisted into a shape that made them veritcle and more transportable. Yes - there are parents out there like that.

It horrifies me.

But this weekend, the thing I found most wonderful about our little gathering was that each of us appreciate our own and each other's kids for who they were right then and there. Not for what they will become. Because they all have neorolgical issues and we all agreed that the doctors can't predict outcomes - especially neurologists. I was in a situation where the parents all knew their kids really well. The bonds were tangible. There was no crying or fighting and lots and lots of play and fun. I was in a situation where wipping out the g-tube to feed your kid or give them meds was done with out blinking an eye. I was in a situation where none of the kids was verbal but all were communicating quite well and every adult understand what they wanted - a toy, a hug, enteratinment.

It was nice. It was our normal.

It's sad and just plain wrong when the under the surface goals of being normal seem to have to relate to surface qualities of looking like everyone else and doing what everyone else does. It was a given with these parents that we love our kids and respect them. It is a given that we are all fiercely protective. Sadly we all had stories of cruel comments and unkindnesses directed at our beauitiful children - Ellie and Xavier being the oldest at the ripe old age of 5. Can you imagine being mean to or making a snide comment about a child? A toddler? Someone under the age of 5? It's unbelievable.

So, that is my question. What is the goal of normal? Why is being normal so valued? I am not sure Walking is it.

David, very, very graciously answered my question about high tone here. Thanks David. I realize it's the least favorite thing you like to blog about. I am very grateful. You have had me thinking every day since you posted about it. You have reinforced my belief in tummy time.
I am always impressed when I see pics of you sitting so straight or lying prone propped up on elbos reading as you have a bite to eat. I can only hope that Ellie will be so strong some day. I am in the shade of your parents who protected you so well and helped you be you based on you and nothing else. It's threading a needle to do that so well, to understand when to intervene or not intervene. I am constantly threading that needle. Some days I feel I have drawn blood and missed the mark, other days I feel like I have gotten Ellie through to safety. It's hard.

Violence against people with disabilities is alive and well. It's violence against people who can't defend themselves. I wonder if, as we integrate more children with CP into our public schools if more incidents like this will happen? I hope we can do a better job as a society to educate ourselves and our children about differences. About not fearing differences but respecting them and celebrating them for all the learning and wonder they bring to make the world such an fascinating place if you have the eyes to see.

Things I do in my copious amounts of spare time...

Yep, I wrote a book, it's called "Which Bird Gets Heard? How To Have Impact Even In A Flock". That's a picture of the cover.

I am pretty psyched that it's finally available on Barnes and Noble as well as Amazon. It represents 4 years of Organizational Development research and much blood, sweat and tears. It's about presense and having more impact in life. It's positive and I hope humorous. It's not about CP though the principles in it can be applied in a helpful way if you happen to be raising a child with CP and other disabilities like me. Go figure.

Anywhooo. I wasn't sure I was going to mention it on this blog. But hey, you don't write a book every day do ya!

If you happen across it I hope you like it and find some use in it and any feedback you have will be greatly appreciated!