A Letter to Santa

I recently recieved an email with a letter to santa from a little girl with Spina Bifida. I found it very touching and wanted to share it with you. and i definitly agree with the wish to have a whole year with out any surgeries!

Dear Santa,

Don't bother to bring me your usual gifts,
These days they don't bring me the slightest of lifts.
I'll even pass on the Christmas with snow,
Latest of gadgets and gizmos from Ronco

You can keep all the jewelled bangles and balls,
And even all your Cabbage Patch dolls.
Here's what our family this year places on order,
For delivery when you come over the border.
Please read it and tuck it away up your sleeves,
Then pull it out once again on Christmas Eve.

Give us a shunt that stays connected,
And doesn't even get infected.
May its flow not ever turn sluggish,
Nor it's tubing ever get plug-ssh.

Two kidneys staying healthy,
Would make us feel wealthy.
As a matter of fact,
Make that the whole urinary tract.

Can you make a spine that will stop its curving,
Listen, I tell you, it's really unnerving!
A whole year without a single operation,
Is what we need to feel jubilation.

Please put your elves right to work,
Inventing an IV that don't hurt,
A spinal cord that won't ever tether,
And a wheelchair that's light as a feather.

Can you put to rest all my suspicions,
That our insurance won't cover pre-existing conditions.
And please help our doctors develop an appreciation
For our endless list of question after question.

Another thing I wish for around the clock,
Is a disabled parking space on every block.
And while you're at it, we'd like a vacation away,
That would last for a least a week and a day.

I could go on and on in a similar vein,
With lots of ideas that would take away pain.
But the chime of the clock just make me realize,
That it's time once again to catheterize.

If you think there's entirely too much that we need,
And if it seems to you that we're chock full of greed,
Actually when you get right down to it,
Any one of the above would just about do it!

Decorate the Season with a Daisy

In the last few months so much has happened that puts many individuals with disabilities in the lime light. And for a change it's been the good kind of lime light. There is Lazy Legz the Canadian break dancer (who is absolutely amazing by the way) who has incorporated his crutches and his incredible upper body strength into this amazing art form. There was the first wheelchair back flip this summer. Wheelchair dance itself is becoming an intriguing art form. And yesterday i was swept away at Balancing Acts 6, the first disability arts festival to come to Edmonton. We watched a documentary-"Shameless: the ART of Disability", filmed by a famous Canadian documentary directer Bonnie Sherr Klein. She had a stroke and has spent the last twenty years adjusting to the world of disability. And what she found was a world of some of the most incredible talents and artists. And I was honoured that they shared their stories and their art with us through the documentary. There is also a new wave of comedians who have disabilities and use those disabilities to enhance their comic sketches, and they are some of the most talented comedians I have ever seen.

I could say much more on this topic and will at a later date. However I bring this up now because this year SBHANA (the Spina Bifida and Hydrocephalus Association of Northern Alberta) is launching an awareness campaign this Christmas to honor people with disabilities because of the incredible talents they have, and to encourage members of the association and other individuals with spina bifida and other disabilities to realize their full potential. Not only does the rest of society have a lot to learn about spina bifida and other disabilities, but so do the people who are affected by it. We need to celebrate disability this Christmas and all of the amazing things we are learning from it culturally instead of just scientifically.

To kick off the campaign we are encouraging everyone to buy a daisy magnet to wear on their bumper. (vehicle bumper, or mailbox, fridge, any where you want it, show it off!) Each beautifully designed magnet is weather proof and guaranteed to last through out all the seasons, and strong enough to be put on any vehicle.

For more information on the campaign and information on how to order a daisy for you and anyone else interested (they make great stocking stuffers) you can visit www.takeaction2006.ca

Celebrate ability this Christmas and help the SBHANA decorate the Season with a Daisy!

Looking beyond the “Label”

a wheelchair princess story.....

Picture the latest “Never Stop Milk” commercial. See the black and white images of ordinary people having labels like “geek” or “nerd” or “loser” fall slowly to the floor. While the people move forward, and the labels get swept into the trash. Now, picture those same images next time you are on a busy downtown street or a hallway at school. The homeless person sitting against a building now becomes just a person who is tired resting for a minute as other people rush by. The person in the expensive coat and perfect hair rushing past you is not a “rich snob” but just a person in a hurry. The boy with long hair and big glasses and pants too short for him with his nose in a book is not a “geek” or a “loser” but just a boy reading a book. You see that the person in the wheelchair, perhaps struggling though the snow but still refusing your help, is not a helpless “disabled person” but a person in a wheelchair who is determined to be independent. When you start to take away the labels, you “see” the people before you “see” the labels. Perhaps the busy person will have time for a quick smile, or the boy with the book will look up and see a friendly face. And perhaps the person resting against the wall, really is just tired, and if they happen to not have a place to live having one person see him or her as a person will go along way to making him or her feel like a person again.

I believe that if people took a little time to see the people before the labels a whole new world would open up for them. Perhaps some one will see the young man at their school who walks with crutches, not as the boy with crutches but see beyond his awkward gait to see his warm smile, and notice that he has fairly built upper body, a positive effect of using crutches most of his life. Start to notice that he is kind of cute and realize that he takes his time to talk not because he is “stupid” but because he puts a lot of thought into what he says so that every sentence has purpose and meaning. Qualities that I think quite outshine the fact that he uses crutches to help him move around so he can do the things he enjoys doing. He may always be labeled as “the person with crutches”, but the first step is already being made because you are putting the person before the disability.

I am a 25 year old woman who uses a wheelchair. I have always been “disabled” but I haven’t always used a wheelchair. I use my wheelchair now because it makes my life easier to live. I do have elbow crutches and use them when I can, which in the snow isn’t often. I find the chair more convenient, it makes it easier to carry things and I can move around the city more efficiently then without it. It makes me more independent. I used to label myself as a “wheelchair user”. However as I became more comfortable with myself, my wheelchair became just a method I use to get around. While it is part of who I am, it is not ALL of who I am. It is because of this that I find the idea of “labels” interesting.

I was recently allowed to partake in an experiment in my dance class. My dance class is made up with a few individuals in wheelchairs and a few more individuals who don’t use any mobility aids. In this class all of us have learned that we can move beyond our own boundaries. For those of us in chairs we are learning how to use our bodies and our chairs to make beautiful movements and interesting forms of art. For those who don’t use chairs they are learning how to get to know the people in the chairs like they would get to know any other dancer. One time we put them in chairs, and they learned not only how it is like to use a chair but how the chair is just another tool to be used to make a dance. In this recent experiment we were asked to wear medical face masks over our mouths. But before we put them on we were told to label them with something we felt we were but didn’t want others to always label us as. I chose “silly”. I don’t care if people call me disabled anymore because I know I have a disability and I am learning how to own it, even in its changing conditions. Other dancers used labels similar to “nerd” “meek” “insane” “butch” and one individual in a wheelchair did use a word similar to “gimp”. The interesting thing about labeling yourself that wearing that label over your mouth as you go about a regular activity is that you start to forget about the label, or you incorporate the label into your movements. You learn to take ownership of it. You may make “meek” movements, or you may begin to think of ways that you can adapt to seem not as “meek.” It makes you really think about it. And the important thing to remember with this exercise is that we label ourselves. These were things we worried about, labels we felt we needed to address within ourselves. Even after the experiment was over, I still think about the word “silly” and how that label makes me feel and how I want it to make me feel. I’m not sure what affect the exercise had on the other individuals in the class but I do know a few girls asked to take the masks home, so I know that I did have some impact on them.

I ask you to think about labels not because I think that we shouldn’t have labels. Labels will always exist. We give them to ourselves and we give them to others. We label our fathers and our mothers, our friends and our acquaintances. We live in a world full of labels. But do they always have to be the first thing we see? If all the labels dropped off every individual would that change how we view each other? I believe that it would. So just experiment one day. Walk around and look at each person you see. Really look at them, before you look at the label they seem to be wearing. You never know what you will discover, about others and about yourself.

To Be or Not to Be....SILLY

I am by nature a very silly or quirky little girl. And cute. Or at least I've been told I am cute most of my 25 years on this planet. I've even been told 'I'm the cutest cute that ever cute'd'. Now you have to be cute in order for someone to come up with something that bizarre. I'm cute because at 25 I can still wear pig tails and pull it off. I'll probably be able to pull off wearing pigtails when I'm 50. That's not an easy feat, let me tell you. In fact i hardly know anyone over the age of 23 that can pull off pigtails. For a more sophisticated yet still way to cute look, I use the side ponytail. I have very straight blond hair, so it doesn't look like the 80's side ponytail don't worry. I'm cute in the way a toddler is cute when they pout about something they just can't seem to figure out. And I get excited like a 5 year old when they start really comprehending the world around them, and trust me I talk just as fast too, sometimes faster. However no matter how annoying it is to be called 'cute' lately, these are traits I have had my whole life. Not everyone has seen them because they never took the time to get to know me, and I wasn't often comfortable enough to relax enough to let my natural silliness out. Then especially in University it was the inability to relax that hindered me. Now as I've gotten older and started to find myself, I find myself being more openly silly. I buy crazy cool socks because I LOVE them. I joke around more often in front of strangers. Bring up topics like History and global change and come up with theories on why things are happening in the world in the same conversation I talk about crocheting or baking. I'm involved in the community and working on projects that will help effect social change. In all of these things, while a huge part of who I am and sort of made up of who i have always been, I was NOT like this just 4 years ago. Either I was not comfortable enough in my own skin or with the people around me, or I just spent my energy in other ways. Like on homework or theatre projects, which while cool, I'm not quite sure how much an impact they have had on society. They did however have an impact on me and have helped develop who i have become and will always be a very large part of my life. My disability and the drastic changes in my mobility have also had a huge impact on my life.
So now while I finally feel like I'm becoming a person I will be proud to be and proud of, I feel I have reached a sort of crossroads in my life. My natural silliness, sometimes referred to as 'cute' is starting to become a liability. It has started to overwhelm my appearance and my behavior. It is effecting my ability to be taken seriously. And now is the time I want to be taken seriously, because there is a certain amount of seriousness, intelligence and a lot of hard work involved in what I want to accomplish, and for that I need to be perceived as a serious, intelligent and hardworking person. Otherwise I won't get far because an advocate needs to be taken seriously, to a certain degree. I already have the social impressions people have about disabilities and blonds working against me, and inorder to counteract them I need to be extra convincing, and I'm not finding that to be that easy.
All of this begs the question: To Be or Not to Be Silly? If silliness if a part of my charm, it would be 'silly' to temper it so much that it ceases to exist, however I need to be able to show my intelligence and capability as well. Now the easy answer is just to learn when to behave composed and when to just be myself. Not an easy task. Not at all. I'm not cute like a 5 year old because I want to be, I just am. I'm extremely expressive and that part of me won't change. I can learn how to slow down my speech and spend more time listening to others instead of always adding in my two cents. However my mouth is having a hard time communicating with my brain these days. I feel like my brain went into overdrive after not being used as much as it should have been over the last three years when i was dealing with my health problems, and now I can't slow it down and because of that I can't even shut up. I've been told this is just a part of growing up and transitioning and that everyone goes through it. Though some how I feel like I have to go through it over and over again and I just never fully catch on to the concept. Maybe it's like cooking. I used to suck at cooking or at least I didn't enjoy it much, hence I never did it. However, over the years I've been forced to cook for myself and others and learned at times how to cook good food and what recipes I liked, and what was fun and what wasn't, then i would stop needing to cook for quite awhile and have to relearn all over again the next time i had to cook for others or throw a party. Now I am known as quite a good cook, and people look forward to eating my food more then going to eat out at a resturaunt and I even occasionally enjoy myself. :)
So I guess somethings take practise, lots and lots and lots of practise.

The Brothers Grimm Twelve Dancing Princesses

For those who have never read the real fairytale; it is one of my very favourites.


The Twelve Dancing Princesses

There was a king who had twelve beautiful daughters. They slept in twelve beds all in one room and when they went to bed, the doors were shut and locked up. However, every morning their shoes were found to be quite worn through as if they had been danced in all night. Nobody could find out how it happened, or where the princesses had been.
So the king made it known to all the land that if any person could discover the secret and find out where it was that the princesses danced in the night, he would have the one he liked best to take as his wife, and would be king after his death. But whoever tried and did not succeed, after three days and nights, they would be put to death.
A king's son soon came. He was well entertained, and in the evening was taken to the chamber next to the one where the princesses lay in their twelve beds. There he was to sit and watch where they went to dance; and, in order that nothing could happen without him hearing it, the door of his chamber was left open. But the king's son soon fell asleep; and when he awoke in the morning he found that the princesses had all been dancing, for the soles of their shoes were full of holes.
The same thing happened the second and third night and so the king ordered his head to be cut off.
After him came several others; but they all had the same luck, and all lost their lives in the same way.
Now it happened that an old soldier, who had been wounded in battle and could fight no longer, passed through the country where this king reigned, and as he was travelling through a wood, he met an old woman, who asked him where he was going.
'I hardly know where I am going, or what I had better do,' said the soldier; 'but I think I would like to find out where it is that the princesses dance, and then in time I might be a king.'
'Well,' said the old woman, 'that is not a very hard task: only take care not to drink any of the wine which one of the princesses will bring to you in the evening; and as soon as she leaves you pretend to be fast asleep.'

Then she gave him a cloak, and said, 'As soon as you put that on you will become invisible, and you will then be able to follow the princesses wherever they go.' When the soldier heard all this good advice, he was determined to try his luck, so he went to the king, and said he was willing to undertake the task.
He was as well received as the others had been, and the king ordered fine royal robes to be given him; and when the evening came he was led to the outer chamber.
Just as he was going to lie down, the eldest of the princesses brought him a cup of wine; but the soldier threw it all away secretly, taking care not to drink a drop. Then he laid himself down on his bed, and in a little while began to snore very loudly as if he was fast asleep.
When the twelve princesses heard this they laughed heartily; and the eldest said, 'This fellow too might have done a wiser thing than lose his life in this way!' Then they rose and opened their drawers and boxes, and took out all their fine clothes, and dressed themselves at the mirror, and skipped about as if they were eager to begin dancing.
But the youngest said, 'I don't know why it is, but while you are so happy I feel very uneasy; I am sure some mischance will befall us.'
'You simpleton,' said the eldest, 'you are always afraid; have you forgotten how many kings' sons have already watched in vain? And as for this soldier, even if I had not given him his sleeping draught, he would have slept soundly enough.'
When they were all ready, they went and looked at the soldier; but he snored on, and did not stir hand or foot: so they thought they were quite safe.
Then the eldest went up to her own bed and clapped her hands, and the bed sank into the floor and a trap-door flew open. The soldier saw them going down through the trap-door one after another, the eldest leading the way; and thinking he had no time to lose, he jumped up, put on the cloak which the old woman had given him, and followed them.
However, in the middle of the stairs he trod on the gown of the youngest princess, and she cried out to her sisters, 'All is not right; someone took hold of my gown.'

'You silly creature!' said the eldest, 'it is nothing but a nail in the wall.'
Down they all went, and at the bottom they found themselves in a most delightful grove of trees; and the leaves were all of silver, and glittered and sparkled beautifully. The soldier wished to take away some token of the place; so he broke off a little branch, and there came a loud noise from the tree. Then the youngest daughter said again, 'I am sure all is not right -- did not you hear that noise? That never happened before.'
But the eldest said, 'It is only our princes, who are shouting for joy at our approach.'
They came to another grove of trees, where all the leaves were of gold; and afterwards to a third, where the leaves were all glittering diamonds. And the soldier broke a branch from each; and every time there was a loud noise, which made the youngest sister tremble with fear. But the eldest still said it was only the princes, who were crying for joy.
They went on till they came to a great lake; and at the side of the lake there lay twelve little boats with twelve handsome princes in them, who seemed to be waiting there for the princesses.
One of the princesses went into each boat, and the soldier stepped into the same boat as the youngest. As they were rowing over the lake, the prince who was in the boat with the youngest princess and the soldier said, 'I do not know why it is, but though I am rowing with all my might we do not get on so fast as usual, and I am quite tired: the boat seems very heavy today.'
'It is only the heat of the weather,' said the princess, 'I am very warm, too.'
On the other side of the lake stood a fine, illuminated castle from which came the merry music of horns and trumpets. There they all landed, and went into the castle, and each prince danced with his princess; and the soldier, who was still invisible, danced with them too. When any of the princesses had a cup of wine set by her, he drank it all up, so that when she put the cup to her mouth it was empty. At this, too, the youngest sister was terribly frightened, but the eldest always silenced her.

They danced on till three o'clock in the morning, and then all their shoes were worn out, so that they were obliged to leave. The princes rowed them back again over the lake (but this time the soldier placed himself in the boat with the eldest princess); and on the opposite shore they took leave of each other, the princesses promising to come again the next night.
When they came to the stairs, the soldier ran on before the princesses, and laid himself down. And as the twelve, tired sisters slowly came up, they heard him snoring in his bed and they said, 'Now all is quite safe'. Then they undressed themselves, put away their fine clothes, pulled off their shoes, and went to bed.
In the morning the soldier said nothing about what had happened, but determined to see more of this strange adventure, and went again on the second and third nights. Everything happened just as before: the princesses danced till their shoes were worn to pieces, and then returned home. On the third night the soldier carried away one of the golden cups as a token of where he had been.
As soon as the time came when he was to declare the secret, he was taken before the king with the three branches and the golden cup; and the twelve princesses stood listening behind the door to hear what he would say.
The king asked him. 'Where do my twelve daughters dance at night?'
The soldier answered, 'With twelve princes in a castle underground.' And then he told the king all that had happened, and showed him the three branches and the golden cup which he had brought with him.
The king called for the princesses, and asked them whether what the soldier said was true and when they saw that they were discovered, and that it was of no use to deny what had happened, they confessed it all.
So the king asked the soldier which of the princesses he would choose for his wife; and he answered, 'I am not very young, so I will have the eldest.' -- and they were married that very day, and the soldier was chosen to be the king's heir.

The Twelve Dancing Princesses

well not exactly twelve, and hopefully not all princesses, we may one day get a dancing prince as well (cross your fingers)

What I'm talking about is wheelchair dance. I love it! I joined a dance class a month or so ago and the very first day i was pretty skeptical going into it. The few live examples i had seen didn't impress me much and i wanted so much more from it. I can't tell you what that MORE was because i didn't know, but i wanted to be able to get something out of it. And that very first day I did. I came home just buzzing and excited and filled with possibilities. Not for dance but for what dance could mean to me. What it did mean to me to move around the space in my chair (which at the time was a decent trial chair with good seating) and i used my body for the sake of exploring movement and my brain started experimenting with different movements and with different movement i could do with the non wheelchair dancers in the class. It was a different pathway into a world i fell in love with in high school. I loved the theatre and i enjoyed acting. i had no illusions about being a good actress but the 'act' of rehearsing and practicing in a way that makes your creative brain work, that i love. But in order to be a good actor you need to be versatile. With a limp and always being the slower movement wise then anyone else i knew i wouldn't make it professionally and i wasn't sure i wanted to do that professionally. So i learned all the backstage stuff, and I loved that too. I miss doing tech for shows, or even doing props or costume running crew. And i really miss assistant directing. Directing was great too. but i loved being able to observe what a director wanted then using a different perspective help mold the actors toward his or her overall goal. I was good at that, I am still very good at that. But with very ailing health I had to leave that whole world behind for quite some time it seems. Now I have moved on and found other very important purposes for my life, but i will always love the theatre and be constantly inspired by it. This Dancing class has given me a way to exercise my body, interact with people in an intimate way that you only can find in arts productions. And it has given me a physical outlet for my creativity. I didn't expect this to happen in fact i didn't even know it was possible. But it is and it just makes you think about all those possibilities out there that could perhaps be possible after all.

So now I am a dancer and a board member for a new pilot dance class. This year it is aimed specifically at people with spina bifida. Many people met at the national conference this last September and many have been amazed at the great people we met with similiar conditions, and how everyone can be considered an inspiration. And now we are working hard to keep that connection and offer it to others. We had our first real dance class today. It is way different then the other dance project I am in. This class is aimed to teach skills as well as explore the skills we already have. It is great because it's slightly more structured yet still explorational. today many of the exercises frustrated almost all of the dancers including myself. Though i have incredible persistence when it comes to stuff like this, i love stuff like this therefore i don't give up easily i find pleasure in the challenge. Just like many could compare that to their dedication to other sports. What i like about this class though is that we can encourage one another. So even if none of these girls decides to continuing dancing after this year, i hope they take with them the love and support and encouragement they got from everyone else. It may give them to courage or the persistence to try something else they really like, or to try to find something that they really connect with.

Everyone I met so far in both projects have been amazing. Each with their own endearing qualities and wonderfulness. Not only did i find a doorway into a world where i can express myself, i entered a doorway that gives me the opportunity to meet some truly amazing people. And as much as i like the instructors who aren't in chairs, the girls who didn't know anything about chairs are amazing because of there excitement to learn about them, to play with them and bring new life to the project. They don't see me as disabled anymore they see potential instead. And i get to meet the amazing girls in chairs, or who have spina bifida but have accomplished so much, and have the most amazing and fun personalities. My life feels like a much brighter place because of my opportunities to work with these great people.

So I am hoping this is just the beginning of the tale of the twelve dancing princesses...

Definitley Not an Ice Princess

really really not a fan of ice....

So I am sorry to report that winter has officially set in. Winter Jackets, gloves scarves and sweaters have all come out of hiding and my chair brings lots of muck with it from the outside. I love my winter jacket and my scarf. I really need new winter gloves because my fingers are freezing off when I'm outside, but that is also fixable. My only complaint really is that my current chair sucks period. It is awful trying to wheel through sludge and snow and ice, and do you think people EVER properly shovel the sidewalks? HELL NO! Oh and people think that it's polite to start pushing me. Instead it scares the hell out of me. I'm already irritated about winter taking away some of my security outdoors, and when some unknown person starts pushing me they not only are violating my personal space but they are further enabling me. I don't want to be dependent on someone to push me. or have it appear that i need it. My life is filled with so many amazing things right now. and I'm working on so many projects that are very important to me, and I'm in two wheelchair dance classes that are just an incredibleexperience. I feel free and like the world is my oyster for almost the first time in my life. So i may get a little bitter at anything that threatens to take that away from me.

However instead of sitting here being miserable about the snow like i have in years past, I started baking. So far i made a brownie cake, and banana bread. There's a pumpkin loaf recipe that looks really appealing i might try next. The oven keeps my house warm and baking is a nice distraction. And my friends aren't complaining. My belly might start so i need to make sure i don't eat to much of what i bake. I promised the OT who helped order my new chair i wouldn't gain any significant amount of weight so i could still fit in the chair. As good a reason as any to stay slim i guess.

So while i am not a fan of winter I'm not going to let it get the best of me, and I'll just keep busy until spring only 8 months away.....the winters are way too long here.

Happy Winter!