July 3, 2010

Oh! We used to dream; Now we worry about dying.

I don’t wanna worry about dying.

I feel the need to declare just what this tumblr blog will be about. Rather than having a singular theme, posts to this account will relate to the life and times of a physically disabled indie girl striving for what most eludes her: true independence.

I’ll be posting thought-provoking quotes and images, informative articles on disabilities and adaptive technologies, as well as movies, music, and other forms of media that I’m digging right now. Updates on my own journey to an independent lifestyle will also be provided.

All in all, if I can inspire even one person to get out and live his or her life, then my sitting here glued to a computer screen will have been worth it. So, without further ado, let’s start dreaming…

August 15, 2010
(Me, with my Joanna Newsom ears, signing my PATH plan)
Last night I took one of the first steps toward personal independence. I gathered my friends, family, and neighbors for dinner at my parent’s house and with the help of some advocates discussed my desire to create a microboard. 
A microboard is essentially a non-profit organization consisting of friends and family members who all share the unique the goal of helping a disabled individual his or her needs.
During this initial session, a PATH plan was created to outline my desires, dreams, and what it would take to get there. A giant banner was hung along the hallway, and a large, hollow arrow was drawn pointing to the “North Star”. First I was asked to describe what my wildest dream of my future life, and as I began to name off getting married, having a successful career, living independently, traveling the world, and all the other things I could imagine, a graphical representation of the dream was drawn near the “North Star”.
Next, I was asked to describe my current circumstances— How I was living with my parents, but yearning for independence— and those were written at the tail of the arrow. From there, the entire group was asked to close their eyes and imagine it was 2020. Where would I be then? One of my friends spoke up first, and outright stated that he thought most, if not all, of my “North Star” dreams could be achieved by 2020. Everyone else agreed.
This in and of itself lifted a great weight from my shoulders. Before the meeting I’d felt like all the aspirations I’d thought of were frivolous or simply unattainable. Hearing my closest friends and family all agree to the contrary provided a large sense of empowerment. Images of all these attainable goals were then drawn within the head of the arrow.
Finally, the middle section of the arrow was broken down into several sections, each describing the ideas my family and friends had for building up the strength and resources needed to live the independent lifestyle I so desire. Writing all these steps out and seeing my dreams come together on paper relieved any other feelings I had of being overwhelmed by the apparent difficulties to come.
It was a true moment of self realization: This can be done.
I highly suggest anyone trying to find their way, disabled or not, to try the PATH method out. I wasn’t a believer coming into it, but it’s worked wonders.

(Me, with my Joanna Newsom ears, signing my PATH plan)

Last night I took one of the first steps toward personal independence. I gathered my friends, family, and neighbors for dinner at my parent’s house and with the help of some advocates discussed my desire to create a microboard. 

A microboard is essentially a non-profit organization consisting of friends and family members who all share the unique the goal of helping a disabled individual his or her needs.

During this initial session, a PATH plan was created to outline my desires, dreams, and what it would take to get there. A giant banner was hung along the hallway, and a large, hollow arrow was drawn pointing to the “North Star”. First I was asked to describe what my wildest dream of my future life, and as I began to name off getting married, having a successful career, living independently, traveling the world, and all the other things I could imagine, a graphical representation of the dream was drawn near the “North Star”.

Next, I was asked to describe my current circumstances— How I was living with my parents, but yearning for independence— and those were written at the tail of the arrow. From there, the entire group was asked to close their eyes and imagine it was 2020. Where would I be then? One of my friends spoke up first, and outright stated that he thought most, if not all, of my “North Star” dreams could be achieved by 2020. Everyone else agreed.

This in and of itself lifted a great weight from my shoulders. Before the meeting I’d felt like all the aspirations I’d thought of were frivolous or simply unattainable. Hearing my closest friends and family all agree to the contrary provided a large sense of empowerment. Images of all these attainable goals were then drawn within the head of the arrow.

Finally, the middle section of the arrow was broken down into several sections, each describing the ideas my family and friends had for building up the strength and resources needed to live the independent lifestyle I so desire. Writing all these steps out and seeing my dreams come together on paper relieved any other feelings I had of being overwhelmed by the apparent difficulties to come.

It was a true moment of self realization: This can be done.

I highly suggest anyone trying to find their way, disabled or not, to try the PATH method out. I wasn’t a believer coming into it, but it’s worked wonders.

September 21, 2010
"If Superheroes Were Hipsters" by Caldwell Tanner on CollegeHumor (via hardlyart)
Mine’s totally a fixy, too. 

"If Superheroes Were Hipsters" by Caldwell Tanner on CollegeHumor (via hardlyart)

Mine’s totally a fixy, too. 

3:40pm  |   URL: http://tmblr.co/ZCPfGy15JHsP
  
Filed under: Hipsters Fixies Disability 
September 25, 2010

"Ambling Alp" - Yeasayer


Now the world can be an unfair place at times,
But your lows will have their complement of highs;
And if anyone should cheat you, take advantage of, or beat you,
Raise your head and wear your wounds with pride.

November 17, 2010
Women with Disabilities in the Modern World: A Brief Introduction

The modern web is full of great advice for the modern woman. There are lots of lifestyle sites to be found, a plethora of “mommy blogs”, and a cottage industry of communities for women from all walks of life…   

There are countless campaigns promoting issues specific to women’s health and wellness, self-esteem, human rights and abuse, and in this age of social media, they are able to receive the exposure they well deserve.

What many don’t realize as they seek advice, share stories, commiserate, and fund raise with other woman is that (at least in the United States), as many as 1 of 5 of their fellow moms, aunts, sisters, colleagues, and friends is a woman with a disability.

Why would they necessarily realize it? Many of us who are women with disabilities are  busy enough just trying to live our lives the way any woman would, with the same stresses, stories, and successes as our non-disabled neighbors.  We are similar in as many ways as we are different, so self identifying as a woman with a disability doesn’t always come up.

And yet, there are some important ways in which we’ve discovered attention should be paid to the lives of women who also happen to have disabilities.  As women with disabilities, we’ve got a responsibility to ourselves, our loved ones and our communities, to understand some very real dangers that come with the territory of being who we are. People who don’t have experience with disabilities in their lives should also be aware of what is out there, because without allies, there will never be enough awareness to change some of the disturbing facts we’ve discovered over the years.

[…]

Along the way, we discover differences, as well as some common ground among many of of the women we’ve encountered:

  • Many of us have the ability to see the world as both the caregiver and receiver of care at a younger age, giving us a broad understanding of the cycle of life not understood by many people until the end of life.
  • We have the ability to see our bodies as unique and powerful, as well as see the uniqueness in other bodies that society deems unworthy.
  • We can also, if we so choose, sexualize our bodies despite the dominant voices of society telling us we are unattractive, undesirable, and incapable of sex or being sexy.
  • We can give birth and raise children despite medical professionals and society telling us it is impossible.

[…]

This is why as a group, we challenge ourselves to face these realities head-on. To admit them to ourselves, and to share them with others. We encourage women with disabilities to educate themselves, be proud of who they are and how far we have come, and also to fight against stigmas and statistics that follow them.

There is a delicate balance between living our lives and fighting for them, and too often, too many of us are fighting. In a more perfect world, this balance would be different but for now we need to focus on the commonalities we have, and stick together through the fights we must face, as well as the great joys in life we share.

December 31, 2010

Building The Disconnect! by Jessica Blinkhorn — Kickstarter

Jessica Blinkhorn is currently working on a series entitled The Disconnect. The works are based on the idea of beauty. Most, if not all, individuals find imperfection and dwell on “Why?” This lack of confidence, in effect, causes a social disconnect.

Yet, there are a select few who are born in the disconnect. Individuals with physical differences and/or disabilities of any sorts spend a portion of time in the disconnect but, in passing time, discover the very part that has disconnected them from the social standards of beauty is the same factor connecting them to themselves. 

The works being created will feature people who are both born in or evolved by the disconnect. Figurative works spotlighting the areas of disconnect will create personal narratives of the models used.

Please consider contributing to this wonderful project!

6:36pm  |   URL: http://tmblr.co/ZCPfGy2NreVw
  
Filed under: disability art kickstarter 
January 13, 2011
My friend, Jessica Blinkhorn, just finished this portait (of me!) for her Building the Disconnect series. If you like what you see, please consider funding this truly thought-provoking series of artwork by a truly talented artist: http://www.kickstarter.com/projects/1148685829/building-the-disconnect

My friend, Jessica Blinkhorn, just finished this portait (of me!) for her Building the Disconnect series. If you like what you see, please consider funding this truly thought-provoking series of artwork by a truly talented artist: http://www.kickstarter.com/projects/1148685829/building-the-disconnect

January 25, 2011
"

So, before I rant, I have an omission. I am alone. Sure, I have friends and family but, for the most part, feel alone. I will NOT go so far as to pull out the violin, hillbilly harp, and, pardon the redneck jargon, begin “belly aching!” “Oh poor me, no man wants me because I am big and in a wheelchair, OH LORD…WHY?!” Yes, I am plump, round, and roll on the ground. But, those physical characteristics do not define me. I kick ass…well…Metaphorically speaking! Where am I going with this? Oh, yes…I feel alone.

I dread the idea of spend another Valentine’s Day alone…single. Seriously, the last time I had a boyfriend on February 14th was in 1991. His name was Robert Carter. He delivered me a baggy filled with Necco Sweetheart’s and two cedar hearts bound together by a red ribbon. It was, at the time, terribly sweet and, honestly, I would piss the seat of my Electric wheelchair if I were to relive that lame and lovely moment when life was simple. I keep getting off track! I have a head cold and it is 3:13a.m. My apologies!

I am quick to resolve this whole single issue! I am a cool chick. I should not be single, right? A very dear friend of mine and a few others have suggested looking into fetish sites. Of course, I have turned my nose up at the suggestion and very idea of being a fetish. Curiosity got the better of me and I decided to type “Wheelchair Girl Fetish” into Google search.

There, I found “A Paragirl’s Special Place.” Aw! How sweet?!

Thoroughly excited, I began to look around. Running vertically down the right side, a copious amount of beautiful women. Obviously, this was a site catering to men so, I figured “Damn, I will check out my competition!” To begin with, some of these women, if not all, have a pseudonym, and I would say, roughly, 70% are Asian. Not that there is anything wrong with that it just calls to mind another fetish which caused my eyebrow to raise with a verbal response of “Must be a coincidence.”

I continue my search with a click on page one. Her name is Iron and she is in a manual chair from Quicke. A very cute, thin, girl with dimples wearing all gray, and a hot pink cast on her right leg. Wait! A full leg cast on a paraplegic!!! Some one needs to fire their care attendant! Girl two…a blond…fake tan…a “DIVINE” amount of make-up. I looked at her profile pic/head shot, no competition! NEXT! KOUYA! A porcelain doll face…another leg cast?! Who the fuck is in charge of hiring assistants?! NEXT?! Yes, you guessed it, another leg cast. Coincidence? I think not!

Those reading this are probably asking yourselves “What’s your point?” “Where’s the link?” “Jessica, Have things become so desperate?” *sighs* Yes, yes they have! But that is neither here nor there. My point is if you have a fetish or fantasy where you are the nurse, physical therapist, or doctor to Belle on wheels, try out the legit shit! Why fake the fantasy when you can test drive the real thing?!!

The analogy here is: You are shopping for a new car but you go to a bike shop. Yes, there are wheels but it’s not a car, asshole! Not even if you go “Boodin-boodin…eeeeeerrg!” while riding it…It is still a bike!

I am asking all my four wheeled, walker using, leg brace wearing sister’s to know you are the real thing! You are a woman. You are in a wheelchair or use other devices of assistance. But, NEVER are you a WHEELCHAIR Woman! You are a woman who looks just as good sitting as she would standing and we all look the same when we are flat on our backs!

I would much rather be alone than to be a fetish…because, it’s all a fantasy and, I don’t know about you, but I spent plenty of time in fantasy-land as a small child. I don’t really want to revisit it as an adult with a grown man whose engine gets started not at the sight of me but by my machine. I do not want a man to love me because of but despite my wheelchair. I am a person and, um, last I checked, that is what we aim to fall in love with…unless you are into Beastialty. Life is a fetish, I guess…

"

Women on Wheels Unite and Roll in the Streets with No Bra’s!

by Jessica E. Blinkhorn

February 2, 2011

Kid In Wheelchair Crowdsurfs At Rock Concert - Watch more Funny Videos

Kid In Wheelchair Crowdsurfs At Rock Concert Video

I’ve always secretly wanted to do this! Almost happened during Arcade Fire at the Atlanta Civic Center, but alas! I chickened out.