My name is Karli Steen I am 24, and living with Spastic CP. This blog will outline any issue I deem to be interesting or important; mainly (but not always) highlighting my experiences with a disability.
Saturday, 22 November 2014
This is the Best
Last night, I saw one of my longtime favourites USS, or Ubiquitous Synergy Seeker. It's hard to put a name to their sound, but I've been to a show every year since 2009, and have never been disappointed. The best part about them is not only their music, but also the kindness they show towards fans. Every time I go to a show, I've gotten a hug, or a chance to sing along. Nothing beats being remembered an recognized by a band that I love!
Tuesday, 4 November 2014
Just like a Puzzle
Karli
Friday, 31 October 2014
Black Cat
Wednesday, 29 October 2014
Tears of the Fallen
Monday, 13 October 2014
Thankful
Thursday, 4 September 2014
Finding Balance
Tuesday, 2 September 2014
The EA Effect
Saturday, 9 August 2014
Stuck in the Moment
Friday, 8 August 2014
Selective Support
This letter was published in the July 26 edition of the London Free Press, after some built up frustration…
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While most of the support I receive is excellent, I’ve been having problems with some people who complain about every aspect of a support worker job.
Welcome to a job where you are paid decently to do everyday activities. This job doesn’t allow you to pick and choose what you wish to do. Your job encompasses everything from assisting with personal care to assisting with the cleaning and maintenance of household animals. Any allergies and other health concerns are noted and understood.
You simply don’t like dogs, cats, cooking or cleaning? We never wanted a lifestyle in which we constantly need to ask for help. Your job will never be thankless, unless you make it so yourself.
You took this job because you thought it would be easy? Life is never easy, and helping others takes a lot of emotional strength and compassion. Just because you help us, does not make you more superior, or give you the right to pass judgment on what is right or wrong in any aspect of our lives.
You took this job as a bridge into a nursing career? That does not make you a nurse yet. You will, without a doubt, be dealing with more graphic and gruesome things than dogs, cats, cooking and cleaning.
Your job is to help, not to hinder. Independent living does not mean selective oppression of human rights.
Karli Steen
Monday, 21 July 2014
CatLog: Entry #1
Sunday, 20 July 2014
Meet Tyrion!
Wednesday, 25 June 2014
Go Forward
Wednesday, 11 June 2014
Writing Rewind: My First Year at Fanshawe
I love to meet new people. I find, upon introducing myself, they tend to assume I am unintelligent. I know people fear what they do not understand; however, it is always more prudent to know someone before drawing such conclusions. Do not be afraid when you come across someone with a disability. We may do things different, appear different, and act different; but, never forget that age old saying, “don't judge a book by its cover.” Categories are simply limiting; life is rarely categorically simple.
The truth is, even people with the most severe disabilities are able to communicate their intelligence and express their opinions. A little patience is all that is necessary to swim those depths with these people. You cannot deny it is nice when someone takes time out of their day to listen to what you have to say. These people are no different. Some people use communication boards, others use sign language. Disability or not, communication is always possible. If, for any reason, you still doubt our intelligence, look around, there are many of us here at Fanshawe. If we lacked intelligence, we would not be here.
Among the things I have noticed is the difficulty in getting from here to there around the campus. There are several aspects I have noticed which contribute to this problem.
The hallways of Fanshawe hallways are filled to the brim at the time I need them to be clear. It is no secret the hallways are so busy that extra minutes must be factored into the trek between classes. Typically, I add extra minutes on top of what you would add; but, there are still a few things that tend to slow me down.
Groups of friends gather in the hallway while awaiting class. They are engrossed in their conversation and they fail to notice the spot which they have occupied is actually a thoroughfare. So you must be thinking; well, why don't you just say excuse me? That is the first thing out of my mouth; but, when I politely use the phrase, and then receive a look which suggests why the hell should I move for this alien, I wonder why am I being polite.
I realize I must look like a short little alien attached to 300 pounds of metal. The truth is, I am a person too. I will always be as polite as I can, even if the favour is not returned. Now I ask you, after someone politely asks to pass, does moving out of the way have to include flashing a dirty and non-comprehensive look?
Upon receiving this look I am inclined to barrel through. Those of you who think this is rude are in no position to judge, nor should you, lest ye be judged. For future reference, the next time you are standing in the hallway, try to leave a clear path for others. We are not as limber as you presume we should be. So… Get the hell out of the road – OR get run over!
The next challenge of the day is the elevator. I often find myself evaluating which ones would take the least time to use. For example; I have figured out that the M elevator is much slower than the one in H. If I want to make it to a class in B on time, I do not waste my time looking for the meticulously camouflaged elevator situated at the opposing end to the entry of B building; I head straight to the one in T building.
Although I have this down to a science, there is no guarantee it will save me any time. Some days when approaching an elevator, I find myself encircled by able-bodied people.
I suppose to able-bodied people there is a disconnect, an ignorance or denial. I understand the convenience of taking the elevator. I have no other option, I have to take the elevator. When the elevator is full of people who are capable of using the stairs, and there is no room for a wheelchair, I am being denied the services which Fanshawe has put in place, as well as being late for a class.
Such incidents have happened on several occasions. It is not funny to see a wheelchair stuck half-in, half-out of an elevator; some students think this is hilarious. While it is a common past-time to giggle and titter at situations which we think we will never have to encounter, I remind you of a term we `challenged` persons have for you, TABs!
Loosely translated, TAB means Temporarily Able-Bodied persons. Your abilities are temporary: some more temporary than others. Think about it, we all end up disabled somewhere along the road of life. Car accidents, sports injuries, diseases and aging are but a few of the ways in which the playing field becomes level, for everybody. The world has a way of reminding us we are all vulnerable.
To be honest, I would much rather spend my time climbing stairs. I, myself, would die for that chance. So the next time you feel like taking the elevator, be my guest, but make sure you are not denying the space to anyone who truly needs it.
Finally, I arrive in class and park myself out of the way. As soon as I park, I turn into a magnet. Students and teachers seem to gravitate towards my chair, as if the whole universe spins around the centre of my chair. During lectures, teachers tend to move around the room, gradually reaching the spot in which I have parked. They use my chair as something to lean on, or just to hold on to. Students act similarly, touching my chair every time they walk past, or placing their feet on my foot rest if I sit close enough to them.
In high school, I helped in a disabled classroom and they taught me something called "wheelchair etiquette". In short, it is not polite to lean on a person's wheelchair, or even touch it without any given consent. The chair is my personal space. WARNING, I may bite; remember, you are scared of me.
I dislike that I am attached to a 300 pound piece of metal; but the fact is, it is a part of me. Touching someone's wheelchair without permission, is the equivalent of stepping inside an individual’s "personal bubble". After my personal bubble had been broken several times at Fanshawe, I began to ask myself why. Why are people so fascinated with the feeling of 300 pounds of scrap metal?
I would like people to know that I much prefer a smile when acknowledging I am in a room. It is not bad to have your presence acknowledged, but there are better ways to do so than awkward physical contact.
I would like to thank the people who help me, in big and little ways: The students who kindly open the door for me, or opt to take the stairs when they see I need the elevator: My teachers who encouraged me to write this article: My fellow wheel-bound aliens. Most especially, I need to thank the two ladies who helped me out of a snow-bank last week. I realize my college life, without the help of people who notice the small things, would be a lot more difficult.
Finally, I'd like to thank you, the reader for taking the time to read this article. I hope it sheds a little light on the shadows which you pass in the hallway every day. We all have struggles in front of us, that`s the way we learn. I will continually be confronted with struggles as I go along, but that's just the way things roll.
Tuesday, 10 June 2014
The House of Blue
Sunday, 8 June 2014
Escape
Saturday, 7 June 2014
Actions Speak Louder than Words
Tuesday, 3 June 2014
Sticks & Stones Haven't Reached my Bones, but Names have Historically Hurt Me
Saturday, 31 May 2014
The Little Things
Wednesday, 28 May 2014
An Alternate Reaction
Friday, 23 May 2014
In This Week's Issue of Trivial News…
Monday, 19 May 2014
Just Roll with it!
Monday, 28 April 2014
The Size of Shame
Saturday, 12 April 2014
The Regis Article: Finding A Hero
I knew that other people faced similar situations as myself. However, they were all men. Although when I was younger I was a huge fan of Terry Fox, and Rick Hansen, I also knew that none of the men ever faced anything remotely close to what I was dealing with. Sure, they had obstacles as I did, and they took them head on as I have learned to do today, but they never faced theirs as a young girl.
I wish that when I was younger, I had the guidance, or at least knew of someone who was in a similar situation as I was. Growing up the only thing I felt I could truly relate to was quite literally the Transformers series. There was nothing on the TV that ever told me a different body was beautiful. No commercials with even a man or a woman living life in a wheelchair. TV presented people in wheelchairs as the mad scientist figure, like the scientist in Tim Burton's Nightmare Before Christmas, or a headmaster in a school for super-powered mutants, like Charles Xavier in the X-Men series. Although I enjoyed both, they still paint a disability as encompassing abnormality, and as a whole, something feared and undesirable.
With the birth of reality television, I believe we have reached a new extreme. Instead of highlighting the undesirable aspects of an issue, I believe that reality TV over glamorizes simple things. Don't get me wrong, it is good that disabilities and other issues are being showcased on TV, but when it comes to reality TV I feel it is the wrong way to approach them. For example, there is this show on television called Push Girls, which documents supermodels that have suffered “freak accidents that have left them paralyzed. While I do have some sympathy, for what they are newly facing, it is not a fair judgment of what living with a disability entails. For one thing, they will never have to fully deal with body image, because they are still left with their model bodies they had before their accidents. They will never face the problem of overpriced necessities, because their TV show and modeling careers cover a substantially larger amount of the cost in comparison to the average person living with a disability. They will likely never face the problem of their needs not being met because of their State’s inability to access or provide the materials that may meet such needs.
Because of this recent change in the representation of disability, I fear for those who now grow up dealing with the same thing that I once did. Instead of having next to no one to look up to, youth of today will now have many different people, and with that many different perceptions of the way their life should be lived. While that could be positive to some degree, it could also have a negative effect. The media today is so much more influential than when I grew up, and because the media world is expanding, I believe that there is a big risk for the youth of today to lose sight of themselves. Being constantly bombarded from every angle with ideas of what is normal, could potentially cause an identity crisis between who we are and who the media says we should be.
Having a disability myself always raised my curiosity as to how other people of the world managed in the same situation as I was, and how the knowledge of disability, had changed over the course of history. The truth is, with the invention of reality TV, the true, reality of disability will never be fully understood, and fewer people will raise questions such as, "do other countries have the necessary resources to provide for people living with disability. They may never know to question policies such as China's one child policy, which not only eliminates the female population, but also the disabled. Disability is more than triumph over "tragedy".
If there's anything that I have learned from growing up with a disability, it is the fact that you can live without a hero. Surround yourself with people in similar situations of yourself, but do not let their actions wholeheartedly influence your own. Surround yourself with others in different situations, and share many perspectives, but do not become overly dependent on the affirmation of others. Celebrate what you've become on your own accord. Be thankful for the family and friends that have supported you throughout life's experiences. If you seek beauty, look deeper than what is reflected in the mirror and in the media. If you seek a hero, look no further than within yourself.
Monday, 7 April 2014
The Benefit of Woman's Studies
Thursday, 3 April 2014
Keeping the Faith
Thursday, 27 March 2014
Do What You Want To
Wednesday, 12 March 2014
10 Things I've Learned from King's
Monday, 10 March 2014
Top 10 Pet Peeves of Having Workes
9. When they leave things I need in able-bodied places
Thursday, 27 February 2014
A Rough Winter
Silence
Darkness falls, a city sleeps
Wide awake, my mind, it shrieks
Seeking escape from a frozen cage
That seems an eternal ice age
Rain has fallen, turned to ice
Now, mind and body pay the price
Prematurely plagued by "disease"
No match against this deep-freeze
A simple task becomes a chore
Daily life, an all-out war
Snow, not Earth's blanket, beautiful and bold
But rather my straight-jacket, ensnaring and cold
Isolation is my enemy
Socialization a scarce commodity
Hatred burns, as my heart yearns for sun
Release me! Icy hell, be done
Sleep, like spring so far away
My frozen being shan't thaw today
Winter, cease your grip of violence
Mind, regain some peaceful silence
I wrote this at beginning of December, when knew it was going to get pretty bad… But I know you can see it still works very well for the current weather we are having
Karli