NYLN Disability Culture Zine

[Image Description: A black and white cartoon that shows a big...

Wed, 05 Oct 2011 15:32:00 -0400

[Image Description: A black and white cartoon that shows a big traffic jam. All the cars and trucks are back to back. At the bottom left corner is a powerchair user zooming along. At the top corner reads: Reason #22 and #23 why super crip is super cool, even in the summer: no gas price worries and no traffic jams.]

Super Crip June 2011

by Charlie Hughes

[Image Description: Colorful artwork done by hand. it shows a...

Wed, 05 Oct 2011 15:24:00 -0400

[Image Description: Colorful artwork done by hand. it shows a wolf like creature in a powerchair and a person who is standing. the person is petting the wolf creature. above the two of them is a thought bubble. in the thought bubble is the wolf biting the person’s hand.]

Don’t Pet Me

by Charlie Hughes

[Image Description: Below is a drawing by illustrator Mary...

Wed, 05 Oct 2011 15:19:00 -0400

[Image Description: Below is a drawing by illustrator Mary GrandPre. It shows Harry Potter in an invisibility cloak chasing other characters. You can find Mary’s work at everypicture.com.]

Harry Potter and the Disability Invisibility Cloak
by Cara Liebowitz

It started one morning, when Harry James Potter, also known as The Boy Who Lived, rolled over and fell out of bed with a loud thump.

Through half-closed eyes, he heard Ron ask Seamus: “Did you hear something?” Seamus shook his head. “Not a thing.”

At breakfast, Hermione and Ron didn’t acknowledge him, not even to say “Pass the butter, please.” Neville even sat on top of him and then seemed faintly puzzled when his rear end didn’t touch the bench.

In Transfiguration, Harry was having trouble Transfiguring his dung beetle. He squashed his beetle and asked Professor McGonagall for a new one, but she didn’t seem to hear him. Unsurprising, really, considering the way his day was going. He raised his voice and asked again, and only then did she turn around with a somewhat distant expression on her face. “Oh, Potter. You need a new dung beetle? Right, I’ll go get you one.” Yet he never got a new dung beetle, and he wondered why everyone around him promptly got new beetles when they squashed theirs, and why his was the only tabletop empty.

Out in the corridor, Harry tripped over one of Fred and George’s fake wands that had been left lying around. He fell hard onto the unforgiving floor, his books flying out of his arms. But despite the rather dramatic crash, no one stopped to help. Students rushed busily to their classes, and not one of them slowed down. Some stepped over him; some of them weren’t even that kind and stepped on him. His books were flung in all directions, most left with dirty footprints on the covers and crumpled pages torn. Groaning, Harry hauled himself to his feet and slowly gathered his books while the corridor cleared. Only then did he see Dumbledore standing serenely at the end of a long corridor Harry had never noticed before, next to a mirror in an old, ornate frame. Dumbledore beckoned to him slowly with one long, crooked finger, and for some reason, Harry felt compelled to obey.

“Professor, what’s wrong?” Harry asked desperately, when he got to the end of the corridor. “Why can’t anyone see me?”

“Why, because you’re invisible, of course!” Dumbledore indicated the mirror with an amused gesture. “Have a look and see for yourself.”

Harry stared into the mirror; he could just make out the faintest outline of his reflection hidden underneath the folds of his invisibility cloak. He tried pulling the cloak off. Then he tried shrugging, tearing, and ripping the cloak off. Nothing worked. Finally he sat back with a resigned sigh.

“I realize, of course, that this must be extraordinarily difficult for you.” Dumbledore said gently. “Growing up as the Boy Who Lived, constantly in the limelight, hasn’t made it any easier.”

“But Professor,” Harry pressed, “surely there must be some way to get the cloak off?” With a flick of Dumbledore’s wand, a lavishly decorated armchair appeared next to the mirror. Dumbledore took his time settling himself comfortably into it before he replied.

“Yes, Harry, there is. But it is a long, slow, and unforgiving process. And being invisible can make you extremely lonely. As we have already seen with Lord Voldemort’s return, people are not keen on acknowledging the existence of somebody they prefer not to deal with. You will be made to feel like a problem and an inconvenience at every turn. Your needs will be routinely marginalized and dismissed, because you require a little extra ingenuity to have your needs met. Sometimes, you will even feel like you are not fully human.”

“Why then, should you even bother to fight? If all your attempts at living are met with indifference by some and outright hostility by others, wouldn’t it be better to just lock yourself in Gryffindor tower and throw away the key? Or better yet, succumb to all the voices telling you your life is not worth living and let yourself die, little by little?”

“You will think all these things and more in your darkest, angriest moments, when all the hope seems to have gone from your life. Sometimes you will wish you weren’t invisible, that you could easily throw away that cloak without a second thought. But that invisibility cloak is as much a part of your identity as your scar is, and denying that part of your identity would be neither right nor productive. And along your travels, you will meet others who are on the same quest. That is the important thing, Harry. You must always try to remember that you are never alone.”

There was a rippling of the air at Harry’s feet. One by one, others pulled off their own invisibility cloaks and revealed themselves to him. Young and old, male and female, black and white, people of all races, ages, and genders shed their invisibility cloaks and nodded in acknowledgment to him. With one smooth, fluid movement, the line of people linked hands, leaving a spot empty in the center. Without quite knowing how or why, Harry realized that spot was for him. Slowly, he took his place in the center of the lineup and felt strong hands grip his on both sides. Together, they walked proudly down the corridor, and here, amongst all these people who knew what it was like to be invisible, Harry James Potter, also known as the Boy Who Lived, started his new life.

Cara Liebowitz is a sophomore at Kutztown University. She is studying special education. She is a NYLN Governing Board member and co-chair of NYLN’s Education and Media committee. Cara is also involved with the I Am Norm campaign, which promotes inclusion and acceptance for people with disabilities in all aspects of society. Cara loves to write. One of her blogs is http://www.candidlycrippled.blogspot.com. Another one is http://www.flutterflyinvasion.tumblr.com .

[Image Description: The word look at me written multiple times...

Tue, 04 Oct 2011 19:29:00 -0400

[Image Description: The word look at me written multiple times in handwriting.]

So What Do You See When You Look At Me?

by Travis Mathe

So what do you see when you look at me?
A young throat attached to a long, blue hose?
Two eyes slightly different above a commonplace nose?
Do you stare at a neck that isn’t quite up and down?
Or at me in a special chair as if I wear a crown?
How ‘bout the machine that is always turned on
Knowing if it weren’t I surely could be gone?

So what do you see when you look at me?
Do you see that I tell stories to people young and old?
Do you know that I craft artwork that is ever so bold?
Can you tell that I’m a gamer from dawn of day to night?
Or that when faced with challenge, I put up a good, brave fight?
Do your eyes see me talking to make another new friend?
Do you see that I’m a Redwings fan until the bitter end?

So what do you see when you look at me?
I’d like you to see that I’m a kind, hardworking guy.
I’d like you to know that I light up from a simple hi.
I’d want you to know that my faith is strong and true.
I’d hope that you would know that I’d never hurt you.
I’d wish you to know that I’m capable in my own right.
I’d yearn for you to know that my life is a delight.

So what do you see when you look at me?

photo credit to Mel J Lewis

Travis Mathe lives with his family in Plover, Wisconsin. He is a ventilator dependent person due to a paralyzed diaphragm. He really enjoys hockey. His favorite teams are the Detroit Red Wings and the San Jose Sharks. He also enjoys playing card/board games, studying history & science, doing arts and crafts: reading and writing.

[Image Description: An artistic rendering of a red blood cell. ...

Sat, 01 Oct 2011 15:38:00 -0400

[Image Description: An artistic rendering of a red blood cell. The cell is circular, with an indentation in the top. Several more cells can be seen in the background.]

Bloodwork

by Sara Vogler

I see the doctor taking more and more blood,
It scares me,
I do not know if I am to die or to live,
Morning comes everyday,
I wonder if I will too.
I feel worthless and unfair,
My heart beats faster by each piercing,
I feel like the life has been sucked out,
I see shadows,
She is there too,
Her body is just as frail as mine is,
I worry about her,
She is crying,
I reach out,
Her hand touches mine.
The doctors are finished,
They turn the lights off,
Peace and stillness arrives,
I am surrounded by night.
As the morning creeps into my hospital window,
I am the survivor.

Sara Vogler is a poet, writer, actor, and disability advocate. She recently graduated from CSU Sacramento. Her degree is in International Relations. She is pursing a Masters in Broadcasting-Journalism. Her favorite thing to say is “I am not a copy of anything; I am an original fragment painted onto a fantastic canvas ready to shed light on the creative foils of life!”

[Image Description: Outside on the ground two white eggshells...

Fri, 30 Sep 2011 15:46:00 -0400

[Image Description: Outside on the ground two white eggshells are laying broken. Photo by ponypandaturtle user on flickr]

Walking on Eggshells

by Holly Klinger

Around the table, with people I don’t like. I felt my nerves. Not sure how to respond. Feeling very attacked. Body is shaking. I’m hot. I just want to go away. Ever since that day I have been walking on eggshells.

Looking back on that day, I can still imagine myself shaking. They do have a point, but the way they went about it was not very nice and was not a very positive way to tell me what I was doing wrong. They made me feel like I was a horrible person. When I know I’m not, I’m just young. I’m still getting used to having caregivers and being on my own. It’s hard to say things nicely all the time, especially when you’re just trying to live your life. I’m the client, I think they forget that.

After the day of that meeting I feel like I am walking on eggshells, they’re almost cracking. I can do nothing right and I feel even more stressed than before. More pressure, when I already have natural stress and pressure to be as good as I can be. Maybe it is God’s way of telling me I’m not good enough or I can improve, because that’s the goal. Keep on improving until the day you die. I don’t like that goal. It’s hard as heck, but I see why it’s there; because it brings us to being better people and to being able to get along better. Better. Better. Better. That’s what it’s all about. I can. I will. Nothing will stop me. Not for a long time anyway, maybe far a minute or two but that’s human. I’m human. You’re human.

[Image Description: A tree laid out against a wooden structure....

Fri, 30 Sep 2011 15:45:00 -0400

[Image Description: A tree laid out against a wooden structure. A brown rope ties it to the wooden structure. There are green leaves behind it.}

What is Disability Culture?

by Emily Holmes

It is family. In some ways culture is about survival. All human beings need to feel like they belong to something and they need to feel connected. Everyone needs a support system of some kind. The family part of disability culture allows the belonging, the connection, and the support system to exist. Disabled people live differently and having that family there to support you can make all the difference. Whenever I come home from Washington, D.C. one of the first things I say to my parents is that I can’t wait for them to come to D.C. some day so they can meet the rest of my family. They know that I’m talking about my disability family. I have found that individuals with disabilities love being around each other and spending time together. Disabled people enjoying coming together for any reason and sometimes there is not a reason at all. There is a lot of caring and support that sometimes can’t be found or is hard to find in other aspects of life. I remember the first time I experienced disability culture and that wonderful family part of it. I was so comfortable with everyone around me. I felt so accepted and cared about even though I didn’t know any of the people around me and they didn’t know me. Family keeps disability culture glued together.

It is pride. This is accepting and loving who you are. It is about feeling good about yourself and knowing that you are an important part of the world. It is about having respect for yourself and expecting others to do the same. When disabled people are proud of themselves they live their lives the way they want to. They have dreams and set goals. They believe that they are capable of success, love, happiness, and everything else that the world has to offer. They don’t see anything wrong with themselves and they know that their disabilities have helped them accomplish what they have done so far and what they will do in the future. Pride within disability culture helps remind disabled people and helps show the rest of the world why we get up in the morning, go to school, go to work, and live our lives the way that we were made to live them. Pride keeps disability culture moving forward.

It is humor. As people with disabilities, we are forced to live in a world that was not made for us. Because of this things go wrong and strange things happen, and it gets funny. Individuals with disabilities trip and fall down too, sometimes they just do it more often, but they pick themselves up, have a good chuckle, and keep going like everyone should who trips and falls down. There are different kinds of humor. There is humor that hurts, humor that heals, and humor that is good for the soul. Disability culture is absorbed with humor that is good for the soul. Here is an example. I have Tourette’s Syndrome so I make strange and random noises and movements that I cannot control. There are times when I wonder why my brain chose the noises and movements that I make. Of all the thousands of options out there one noise that my brain chose is Mama Mia. Yes, I say these two words randomly for no reason at anytime of the day. There are lots of other words and noises my brain could have picked but this is what it came up with and I think it is very funny. To think that there are people on this earth making strange random noises is bazaar but at the same time I love it. The world wouldn’t be as much fun without us. Being able to laugh at yourself is very hard for most people in the world and people with disabilities do it better then any group that I know. It helps make our lives easier. Humor keeps disability culture awake and alive.

There are many other parts that make up disability culture and there are more reasons behind the three mentioned above. I believe that the three mentioned above are some of the most important ones. These are the ones that helped me decide who I was and why I exist in this world. I don’t know what I would do without disability culture and everyone within it.

Emily Holmes has been a disability advocate for over 15 years. She has physical and learning disabilities. She has been teaching people about transition and employment. She graduated from college with a BA in History. She studies disability history and culture. Emily hopes to move to Washington, D.C.

[Image Description: This photograph is a far away image of a...

Fri, 30 Sep 2011 15:44:00 -0400

[Image Description: This photograph is a far away image of a city at night. The photograph was taken from a speeding car and the city’s lights are blurry and look like movement. The majority of the image is a deep black with little specks of color near the bottom half of the image. These specks of color are mostly yellow, though there are also flecks of red and green and a silvery grey.]

To be Autistic
Timotheus “Pharaoh” Gordon

He’s dark sinister, and cunning
Waiting to attack an innocent toddler
Poison the average mind…
Wow! Is that very stunning?

The kid’s still healthy
But is also abandoned, cold-blooded, and silent
Fortunately, he or she is Einstein or Woods
However…does anyone give a damn? Not today!

Professor X will adore him or her
For making a great contribution to Mother Earth
They often make a promise
To protect the mutants from the mob, forever.

On the other hand, it doesn’t matter!
The victim will still be labeled “jackass”.
And worst of all, he’ll continue to scare
And leave the person…battered.

Don’t worry though.
‘Cause it’s possible to defeat him.
When you beat the foe dubbed ‘autism’
Don’t look back! Just let the past go.

That was my philosophy at adolescence. When I, like the rest of the regular humans,
fear its curse. Autism is Pandora’s box: once the secrets’ out it may repel ones who love or give another proof of why the autistic should be excommunicated from
society.

That was my thesis on autism
As fifteen-year-old longshot
From the Chi

Man that’s a false ass statement!
Now that I’m grown
from a naïve prince
to a mighty and wiser
Pharaoh

True! Peers study me as if I’m an E.T.
Wondering how would I fit in the mirage called society
How would he think?
Is he able to please a dime-piece?
Does he communicate like us? Or is he a retarded beast?
That’s the survey an autistic may get

It is true that I’m an InuYasha
Isolated from some of my fellow blood
Stereotyped by medical field and celebrities
As if this “disease” is killing me.

It’s true that
Autism might be the reason
That I shy away from the limelight
It may explain why
I had to give up
My doll
I’m guess I’m hyper-focused because of it, right?

But really people,
It’s not like I’m dying
Let’s just say,
I’m granted special abilities
From the heavens that a
Few
May ever have
Abilities that enabled
Einstein to reach for Nobel
Or reason behind
J-Mac’s 5 minutes of ballin’

As far as could remember in Greek etymology:

Autism = autismus (Latin )=
autosismos (state of being one’s self)
= autos- (self) + -ismos (action or state of)

Hence, to be autistic is to be yourself
If that’s so,
Then why some people
Still to this day
Think it’s abnormal to be yourself?

Why research to get rid of uniqueness?

Timotheus “Pharaoh” Gordon is from Chicago. He has loved writing since 3rd grade. Timotheus liked to copy poems and read history. Timotheus decided he liked poetry after turning in a poem for homework. The poem was funny and about his routine. Timotheus’s poetry has helped him grow his voice as an African American male with Autism.

Timotheus has been doing poetry for eight years. Timotheus is attending SCAD-Atlanta. Timotheus is studying non-fiction and free lance writing. Timotheus wants his writing to inspire people to do Social Justice and sports.

[Image Description: A black and white image of a lake. There are...

Wed, 28 Sep 2011 18:09:00 -0400

[Image Description: A black and white image of a lake. There are boats and a pier. It looks like it could be a location for a summer camp.]

Tragedy Time
by Zoe Gross

I’m talking with a friend, and it’s going well. She wants to know what I did over the summer. Because I trust her, I tell her that I volunteered at a program for autistic kids.

Her eyebrows go up like she’s watching a sad movie. “That’s so heavy!” she exclaims. “Was it really hard?”

I don’t know what to tell her. I try to explain that being autistic isn’t a tragedy like people think. I tell her that the kids are still kids, that actually the hardest part was getting along with my co-workers. But I didn’t like her breathy “that’s so heavy!”, so there are some things she doesn’t get to know. She won’t find out that when I was a kid, I went through the same program.

—-

A lot of people think that autism is a tragedy. Some say it’s so bad that we have to find the genes, we have to prevent it. They say that autistic kids ruin their parents lives, that autistic adults ruin their own lives. They think that the world would be better without autism. Without us.

—-

People say, “You don’t seem disabled.” But they always have an explanation for why I’m so different. “You don’t seem disabled,” they say, “but you do seem kinda weird.” Or “you seem shy.” “I thought that you were just really sheltered.” “I thought that you were from another country.” “I thought you were on drugs.” People make up lots of explanations for me. Autism is never one of them.

Lots of people don’t want to think about disability, about autism. They’re afraid of these things. They think that disability is the same thing as sadness. That autism is so heavy. They don’t want to change their minds.

“You don’t seem disabled.” “I thought it was something else.”

Of course you did.

—-

“What did you do over the summer?” another friend asks.

“Not much,” I say. “How about you?”

[Image Description: The side view of a yellow school bus. The...

Wed, 28 Sep 2011 17:50:00 -0400

[Image Description: The side view of a yellow school bus. The bus door is the primarily point of the picture.]

How ADHD Changed My Life

By Laura Rodriguez

Doing my homework after school was often difficult for me. I opened my schoolbooks, eager to feel accomplished. But I had trouble finishing my homework. I would look endlessly for my homework planner, only to realize it was empty. I looked for my textbooks but would not find them. I often left them in my locker at school. If I did find something to study, I took 20 minutes to reread the same page countless times. My head would was in the clouds. Then I would fall asleep on my books. By bedtime, I had accomplished nothing. I ended this daily cycle by blaming myself for not being able to finish one simple task. I felt stupid and lazy.

This is a small taste of my daily struggle with schoolwork. My name is Laura Rodriguez and I just found out that I am not stupid, lazy, or irresponsible. For years I lived with an undiagnosed learning disability. Before learning of my disability, I was not able to reach my full potential. Learning about my disability has changed everything.

I have recently been diagnosed with ADHD. ADHD stands for Attention Deficit Hyperactivity Disorder. This diagnosis gives me a feeling of control over my life. Before knowing I had ADHD, I was losing all hope of a successful future. This diagnosis gave me access to a number of resources. After learning about my ADHD I contacted my university’s disability services. I also received medication and attended therapy with my psychologist. These changes have lead to significant improvements in my academic life. My personal life has improved, too. Knowing I have ADHD has opened doors to a whole new life. This life allows me to reach my full potential and I am now finally seeing the fruits of my labor.

I now am able to commit myself to endless hours in the library. I study with the concentration and enthusiasm I was not physically or mentally capable of before. I now feel prepared for class when I arrive and when I leave class I feel self-assured. I finally remember the office hours my professors provide and I meet with them and keep a very organized schoolwork ethic. This may have come later in my college years, but now I am proud to say I am graduating college tomorrow!

In working to understand my disability I have also gotten to know myself. I gained the confidence that was bursting to come out of me. I’ve learned that my disability has not been a barrier in my life. It has helped me reveal the greatest version of myself. Because of this, I want to thank my disability. We may have only formally met recently, but I have a feeling this is the start of a long and fulfilling relationship.

Laura Rodríguez is 23 years old. She was born and raised in New York City. She is a recent graduate from The City College of New York. She is applying to law school and looks forward to advocating for disability rights.

[Image Description: An elegant crown sitting on a pedestal...

Wed, 28 Sep 2011 15:57:00 -0400

[Image Description: An elegant crown sitting on a pedestal adorned with flowers and jewels. Photo taken by flickr user carla.piana.]

A Crown on a Mission
By Alexandra McArthur

My suit is pressed, my makeup is done, and an audience of 200 people is waiting for me to address them. But I can’t go out on stage without one final touch. I smooth the sash across my shoulder and put the crown on top of my head. Now I am ready.

A year ago I would have laughed at anyone saying I would ever compete in a pageant. I do not own a hair dryer, have a special “talent,” or have good answers about how to save the world. And I use a wheelchair.

When I started using a wheelchair in 2007 due to Muscular Dystrophy, I did not consider myself “disabled.” I had gotten use to my muscles becoming weaker all my life. Therefore, I did not think using a wheelchair would be any different from my other changes. It confused me when strangers looked at me with pity or when other people in wheelchairs spoke to me as if we had much in common.

I felt no instant connection to others in wheelchairs. I had wonderful friends and family in my life who supported me. In addition, I appreciated using a wheelchair because gave me new freedom and independence. Why would I relate to someone whose only similarity to me was using a chair? However, in exploring my career options after college, I felt a strong calling to advocate for people with disabilities. But how could I advocate for a population with whom I had little contact? I began to get more involved with the disability community. I joined a nonprofit board focused on improving opportunities for people with disabilities and worked to meet people with other women who use wheelchairs.

With a new appreciation for the connections I made among those with disabilities, I saw an article about Ms. Wheelchair America pageants in a magazine. Curious about the program, I found the North Carolina competition website. “Ms. Wheelchair North Carolina is a disability advocacy program which seeks to select the most articulate [well-spoken] and accomplished spokeswoman [someone who speaks for others] to represent persons with disabilities in the state of North Carolina.” I quickly realized that my love of public speaking and my social personality were perfect for this type of advocacy. The mission of the pageant and the excuse to dress up intrigued me. So I applied to be a contestant for Ms. Wheelchair North Carolina.

The North Carolina Pageant was an important event for me. I met women who dealt with their disabilities in many different ways. Both the women I met and the judges who interviewed me surprised me. During the interviews, they challenged my idealistic views. They asked how I expected to go to law school, work towards equality, and possibly raise a family while coping with the changes in my body. I told them honestly that I didn’t have all the answers. I only had trust in myself.

“Alexandra McArthur!” My family and friends cheered when my name was called as Ms. Wheelchair North Carolina 2010, but I did not feel ready. What did I know about disability and about being an advocate? The crown felt heavy on my head.

After the congratulations, pictures, and celebrating, I thought about what I had learned. I realized that not everyone adjusted to his or her disabilities as I did. I realized I might have a unique ability to reach out, advocate, and raise awareness for people with disabilities. I understood that dealing with my disability and how others have responded to it (and to me!) helped me relate to others and problems in a unique way. More than ever, I was committed to making change for the disabled community. I recognized that the best way for me to make a positive impact was to use the platform the pageant provided.

As Ms. Wheelchair North Carolina, I spent the spring of 2010 talking to North Carolina businesses about the many benefits of hiring and retaining people with disabilities. I shared how my job gave me a livelihood, passion, and confidence. Employment is a key element in making significant positive change for people with disabilities.

Talking about the importance of employment for creating inclusion gave me new energy. I was excited to attend the national pageant in Michigan. As I drove up to Grand Rapids to compete in the Ms. Wheelchair America pageant, my expectations were mixed. I looked forward to meeting the other women and the pageant activities. However, I also wondered what had I gotten myself into. I was one of the youngest and least experienced women competing. At the opening dinner, each contestant introduced herself. Despite my worries, listening to their introductions, their stories began to connect with me.

Over the next seven days, my expectations of the pageant were shattered through workshops, activities, and personal conversations. I met very impressive women who became close friends. The group of women was friendly and shared a sense of purpose to help people with disabilities. We all had differences in age, geographic location, disability, education, and backgrounds. But, we were all inspired by what the other women were doing. I soon forgot that we were at a competition. I cared more about bonding with the other women than about who would eventually wear the crown. Their triumphs, struggles, and support, while all remarkably different, were truly inspiring.

With so many new friends, I only expected to enjoy the crowning ceremony (and to cheer loudest for the winner). Sharing the stage with such ambitious and empowered women—who happen to use wheelchairs—I felt a real sense of solidarity [togetherness]. We all sat wheel-to-wheel in our evening gowns and smiled out to the crowd as if to say, “Here we are world; get ready!” As the ceremony continued, I was excited as my peers won prizes such as “Best Speech” and “Ms. Congeniality [the friendliest]” but I was unprepared for what came next.

“Ms. Wheelchair America 2011 is Ms. North Carolina, Alexandra McArthur!” Hearing my name called as the new Ms. Wheelchair America both shocked and moved me. What a gift and a responsibility. Again, the crown felt heavy. True, those sparkles weigh a lot, but it was also heavy with a sense of duty and purpose. I knew that I did not deserve this honor more than any of my fellow “women with wheels.” But I now represented them and their ideas.

I never imagined I would hold the title of Ms. Wheelchair America 2011. This year, I will use this position to spark change. Through speeches, appearances and daily life, I will use what I learned from my fellow contestants to change people’s minds across the nation. Representing the 54 million Americans with disabilities is an unexpected honor. I am ready to inspire, explain, challenge, and lobby. I will increase inclusion for those who happen to have a disability. And I’ll do it wearing a crown.

Originally from Cary, North Carolina, Alexandra McArthur graduated cum lade from Davidson College in 2009. She was the first Fellow for Leadership Development at her alma mater. Alexandra served on the board of the North Carolina Disability Action Network and the National Disability Institute. Alexandra was named Ms. Wheelchair America 2011. In September, Alexandra will move to New York City to become a 2012 Coro Fellow in Public Affairs. Alexandra is passionate about inclusion for people with disabilities, gender equality, and personally promoting positive change.

[Image Description: A piece of notebook paper with faces coming...

Wed, 28 Sep 2011 15:53:00 -0400

[Image Description: A piece of notebook paper with faces coming off the page. The faces are drawn from the blue lines in the notebook paper. This was drawn by JenVaughnArt on flickr and is about autism.]

Hidden Disabilities

By Camille Leacock

People with disabilities have been kept down in many ways for many years. They have been looked at as not able to do things that those without disabilities can do. This has caused children with disabilities to be made fun of by their peers. Also, older people with disabilities have been put into nursing homes; this basically cuts them off from the larger community.

Some people have disabilities that are hidden. These include autism, ADHD, and obsessive compulsive disorder. These people go through a different set of challenges which often happens when they have not yet been diagnosed. This essay covers these challenges.

One challenge is being wrongly yelled at or disciplined for being bad. This happens more for people with autism or ADHD, who often have problems with socializing. They may be seen as making a social mistake (e. g. being too honest about another person’s hair or calling another person a name). They may also be seen as making snap judgments about someone’s intentions or goals. People assume that the person with the hidden disability is being bad on purpose.

Also, people with ADHD or other learning disabilities have trouble succeeding in school. Other people may tell them to stop being lazy or that they just need to try harder. This advice does not make sense because people with learning disabilities are already trying as hard as they can. This challenge can lead them to feel hopeless about their future.

Another challenge is feeling as though they have to hide their symptoms from others because they are ashamed. They feel this way because they might think others will see them as crazy. This is true especially for folks with disabilities such as obsessive compulsive disorder. This can be a problem because when someone hides their symptoms, it can prevent them from ever being diagnosed. Not being diagnosed can keep them from receiving proper treatment.

We are making progress in the US when it comes to teaching others about people with disabilities that are visible. But there are still many challenges that people with hidden disabilities face. This shows that we are still behind in raising the understanding of people with disabilities that are hidden. We need to keep teaching about all types of disabilities. By doing this we will help people with hidden disabilities to learn to cope better.

[Image Description: A blurred black and white picture of a deep...

Wed, 28 Sep 2011 15:41:00 -0400

[Image Description: A blurred black and white picture of a deep scar running down a person’s back. taken by flickr user Antonella.beccaria]

Disabled

by Caitlin Lynch

Bruised bodies;
shells of people.
Can’t dance can’t speak can’t sing or run.
Can’t see a sunset change a desert
from bleak to masterpiece;
can’t hear the sound of thunder
and tremble at the might of the storm.

Unquiet minds,
keep your children close.
Hear voices, see things that aren’t there, stay in bed all winter, don’t contribute.
Drop a dime in the homeless man’s cup,
he’s probably crazy anyway.
Stare hard at the girl with scarred wrists,
condemn her for wanting to miss out on the beauty that surrounds her.

All synapses do not fire,
retards don’t care if we stare.
Can’t read, can’t add, can’t understand the world around them.
Stay far away, they
might drool. Pat their heads lovingly, because
pity is not a concept they’ll ever grasp.

Our limbs may not work,
our emotions may shift faster than the tornado winds gust,
and our cognitive skills may not be advanced as yours.
But, our tears still taste like the murky ocean waters;
our blood still flows, red and fast through our veins;
and our laughter
is just as sweet as yours.

We all know pity,
and we all know disdain, even if
we couldn’t spell it to look it up in the dictionary.
Remember, that we
are much more alike than we are different. Recall that
it doesn’t take a scholar to understand the mystery in a rainbow,
a runner to covet the breeze on bare skin,
or sanity to marvel at the first snowfall.

We ask you to see beyond
our inabilities, our scars, and our failures.
Because
a soul
can never be
“disabled”.

Caitlin Lynch has her B.A. in English and Secondary Education. She is currently pursuing her Masters in Social Work. She volunteers her time as a certified phone crisis counselor and as the editor of the Student Advocate, a publication of the American Council of the Blind Student division. For the past year, Caitlin has worked at her local independent living center, which has both taught and greatly inspired her. Caitlin is blind and is currently working with her first guide dog, a lovable male yellow lab named Laser. In her free time, she likes to read, write, talk incessantly, travel, learn new things, be outside, make people laugh, and spend time with her family, friends, and long-time boyfriend.

[Image Description: A black and white picture of a puzzle...

Wed, 28 Sep 2011 15:28:00 -0400

[Image Description: A black and white picture of a puzzle piece. On top of the puzzle piece is the universal NO symbol, a circle with a diagonal line through it.]

To Autism Speaks:
by Marc Rosen

You say “We have to find a cure!”

A cure? For what?
Is it a cure for who I am?
My personality?
My hopes?
My dreams?
My passions?

Is it a cure for what I am?
My intelligence?
My wit?
My charm?
My sarcasm?

Is it a cure for what I can be?
My ambitions?
My interests?
My perseverance?
My goals?

If not any of those, then what do you hate?
Is it because you hate my differences?
My beliefs?
My morals?
My ethics?
My strength?

Is it because you hate that I’m not you?
Is my difference such a crime that it must be destroyed?

Better yet, can you tell me WHY?
Why do you hate me?
Why can’t I exist as I am?
Why do you have to “cure” my healthy mind?
Why do you have to treat me as inhuman?

Who are you trying to help?
Is it the fetus you screen out and abort for having the wrong genes?
Is it the child you yell at for being “wrong” in ways he‘ll never understand?
Is it the adult you allow to die through your silence?
Is it the hole in your heart which you stain with your cruelty?

Do you blame a vaccine for my existence?
Am I some freak of science who has no right to exist?
Am I nothing more than the shadow of your own twisted heart?
Do I only exist to remind you that you can’t live your life through mine?
Do I hold any value to you other than as a symbol of all you hate?

Or is it just that you fear that you are one of my brethren?
That the very things you have spoken of as filth and disease,
Could actually hold purpose, value, and worth?
Would I then be nothing more than your horrifying fun-house mirror?

These questions I pose to you, oh all-knowing “normal” people
You say you speak for me, so why not give me some answers?

(Reprinted from Perspectives: Poetry Concerning Autism and Other Disabilities [Local Gems Poetry Press, August 2010])

Marc Rosen is an autistic rights activist. He is a force to be reckoned with. From taking charge of his education at age 14 to his activism now, Marc has made his stance clear: nobody has the right to discriminate against anyone for any reason and everyone should be treated equally. He hopes his work will make that belief a reality.

Marc writes for Examiner.com and is active in the Long Island poetry scene. This year he coedited Perspectives: Poetry Concerning Autism and Other Disabilities. In addition to being a writer and activist, he wants to pursue his Master’s in Social Work. His pastimes include long walks anywhere but the beach, arguing, and getting distracted by shiny things (which he has written a poem about).

[Image Description: The Manhattan skyline at night, lit up under...

Wed, 28 Sep 2011 15:23:00 -0400

[Image Description: The Manhattan skyline at night, lit up under a deep blue sky.]

A Breath of New York
By Megan Kelly

I stand on the corner
Of fifth and 14.
The steady, hollow takita, takita of the subway
Vibrates metal grates, slow and deep.
Waves of cars pass me.
Forlorn papers scratch the sidewalk.

Wind presses New York into my nose, my mouth, my brain.
Sweetened by bouquets of the tired-sounding flower man,
Soured by the garbage,
Spiced by food carts that blast their ethnic steam
Like dragons

Air ballooning,
To cram every smell, every sound, every dream.
In me
A jazzy jigsaw.
And I am a part of it.

I do not stand out here.
I am not an oddity
Amongst the crowds and the cars and the crinkling shopping bags.
I am finally standing in a place,
Where I don’t need to see
The light to know
That it has changed.

Megan Kelly graduated with a Masters in Language and Literacy from the City College of New York in 2010. She currently works as a Braille Quality Assurance Specialist and also teaches writing. In her spare time, she enjoys exploring New York City, reading, writing, and spending time with friends and family.

[Image Description: The blue sky is appearing out of some clouds...

Wed, 28 Sep 2011 15:18:00 -0400

[Image Description: The blue sky is appearing out of some clouds over the calm sea with small ripple, a guarde rail of a ship curves around the bottom right corner.]

Sea Of Solitude
by Priyanka Nookala

Calm and quiet the seas were.
Undaunted by life’s challenges,
Ability sailed onward
Crossing the dark seas.
She and her supportive crew
Upon the lonely sea.
The water’s ripples grew to waves,
And gave Ability a violent slap.
Ability almost broke in half,
But was eventually rescued by her crew.
Now, she was empowered
And the sea became calm again.

Priyanka Nookala lives in Saratoga, California. I am currently a junior in high school and my career goal is to become a neurologist. I enjoy writing poetry and volunteering in the community. I also like to meet new people and learn new languages.

[Image Description: A rope dramatically laid on the...

Sat, 24 Sep 2011 18:13:00 -0400

[Image Description: A rope dramatically laid on the floor.]

Wheelchair Bound
by Altaira Hatton

Ropes twist from each wrist.
Thin leather, light as a feather,
bind spoke and bone.

A gag, an orange flag,
caution, object in motion.

Naked skin, chrome rim,
buckles, rivets, nipples,
hermetical black vinyl.

The image of bondage,
of fantasy or fear?

My reality, my physicality,
reflection, sensation, perception,
ties pain to pleasure

Altaira Hatton is a writer and entrepreneur [independent business person] who splits her time between New Mexico and her travels. She is 34. She has had both poetry and prose published locally and internationally. She was born with Arthrogryposis. She believes that biological diversity, including disability, is absolutely necessary for the survival of our species.

[Image Description: A dirt path through a cluster of trees....

Wed, 21 Sep 2011 15:52:00 -0400

[Image Description: A dirt path through a cluster of trees. Taken by flickr user eschipul.]

An Essay About Me

By Kiersi Coleman

My name is Kiersi Coleman and I am seventeen years old. I attend high school, get good grades and love to hang out with friends. I’m just like any other young woman, I just have Cerebral Palsy. My Cerebral Palsey affects my ability to walk and stand properly. I’m often asked to talk about “living” with Cerebral Palsy but that’s strange to me. I don’t think being disabled is a hardship, it’s just a circumstance. Instead, I think the biggest hardship I faced was a major surgery.

Last April I began to experience a small pain in my lower back and hip. I thought I had just stretched a muscle so I brushed it off as something that would go away in time. The pain became chronic (constant or not ending). I pushed through the pain and began to play adaptive soccer once a week. I thought this would help my physical state but instead, it made it worse. My parents made an appointment to go to Shriner’s Hospital. We went in late June and the doctor announced that my right hip had come completely out of its socket. It was worn away, my hip was broken, and I needed major surgery.

During my recovery from the surgery I experienced emotional and physical extremes. I was in a level of pain I never thought was possible. I was required to wear a body cast. I was also having intensive physical therapy and I was on painkiller medication. After my surgical ordeal the intense pain passed but I was left with a stiffness and soreness that I still struggle with today. Most people my age don’t realize what chronic pain is because they haven’t experienced it. I have, and it has caused me to be more determined by putting my pain aside and enjoying life as much as possible. Another skill I have gained from this occurrence is the ability to be alone. Since my surgery was during the summer many people were too busy to come over and visit me or were perhaps uncomfortable to do so. I spent a lot of time alone just listening to music. I missed my friends but it was great for me to have privacy and the time to ponder over how this had, and would continue, to affect my life. Though I experienced pain and loneliness and have had to learn to do things over again because of this incident, I now know what self perseverance is and have gained confidence in myself on this journey.

[Image Description: A blue megaphone with a speech bubble next...

Mon, 19 Sep 2011 15:43:00 -0400

[Image Description: A blue megaphone with a speech bubble next to it. It has exclamation points in the speech bubble.]

Tell Them!
By Elaine Mara

Tell Them We have arrived
Tell Them We are here to stay
Tell Them to listen to Us as We have listened to Them
Tell Them that We have our own way
Tell Them We are different, just like Them
Tell Them We identify
Tell Them We are one
Tell Them We are either Us nor Them
Tell Them We are part
Tell Them of Their society’s differences
Tell Them they can be of Us at any time
Tell Them of Our history
Tell Them of Our heroes
Deaf ones
Blind ones
Paralyzed ones
Nonverbal ones
Hidden ones
Tell Them the truth of what They assume
Tell Them of being ignored, put aside, and pitied
Tell Them of the strength and determination to live as They live
Tell them of You
Tell them of Me
Tell Them of Us
And maybe one day
We will be Us with Them!

Elaine Mara is a graduate student. Elaine goes to Kutztown University. Elaine Has a visual impairment. Elaine is driven to serving college students with disabilities.

[Image Description: This photograph shows blue masking tape...

Mon, 19 Sep 2011 15:35:00 -0400

[Image Description: This photograph shows blue masking tape attached to a white wall so that it makes an “X” shape. This image looks like “X” marks the spot or a no-crossing territory]

Why I do What I Do

By Akemi Nishida

Background: I have written this piece for my psychology class. Later, I read it at a psychology conference. Therefore, this was originally addressed to psychology professors, researcher, and counselors. In addition, English is not my first language. Still, this piece was written in a way which makes sense to me.

You ask me why I do disability activism and studies.

I answer, I do so for disability community, especially for next generations living with disabilities. Everyone is different in various ways, but certain differences are picked for stigmatization (labeling and discrimination) and scientific scrutiny (investigation). We get excluded, put into institutions, fixed or taught to be ‘normal’ by you. In the field of psychology, we are not allowed to have ‘healthy’ or ‘normal’ life, because we have the difference, and the difference must prevent us from being human, like you.

Difference is not any more just a difference; it becomes sociocultural (a combination of social and cultural) and political line between you and me, human and subhuman.

Doesn’t matter you do social justice research.
Doesn’t matter if you are politically left or right. People just repeat ableism.

Disabled people are one of the biggest minorities in this country, 19%.
Bigger than any racial ethnic community, yet how many of us read academic papers including disability in participant’s demography (social statistics)? When 19% of the population is missing from your data, how can you talk about generalizability? (claiming that the research result is applicable to everyone).

Disability community is one of the largest minority community anyone can join at any point. You may get hit by a car or just never get up from your bed one morning. Or if you live long enough, you become disabled.
You tell me that you don’t wanna talk about disability, because of your fear.
But when disability is not acknowledged or talked about, we, disabled, become invisible and untouchable.

When other students are proving to their professors how good and productive they are, we go to professors to prove how slow we are, so we can get accommodation. Society privileges a certain body, cognitive, sensory, and mental type; then, those who do not fit in it need to prove how inferior we are to win ‘reasonable’ accommodation.

But people don’t wanna see disability because of their own fear.
Can we please take a moment to acknowledge my disability, my difference from you?
Don’t add any of your bullshit value or fear to my hand, but just look at me.
My nerve system, bone, skin, and muscle are different from yours.
This society is made for your body type, your cognitive wires and your brain and mental function and not mine.
Don’t make me or my disability invisible and untouchable.

You ask me why I do what I do.
I say, to validate (make known) disabled people’s existence.
We live in a culture where governments and people spend tons of money for scientific research to eradicate disability; while not enough effort is made to change the society to embrace interdependence (mutual dependence).
There, disabled people become invisible and untouchable, because we are your scientific error, deviance, and mistake.
We live in a culture where people believe that death is better than living with disabilities.
We watch TV and movies where killing of disabled is rationalized or seen as a brave act, such as ‘Million Dollar Baby’.
When people believe death is better than my life, death is better than living in my body, I have tons of work to do.

But don’t pity me, I pity you.
You ask me why I do what I do.
I say, for those of you who are nondisabled or temporary able-bodied.
I do what I do to help those who try to squeeze their butts into this illusionary frame of normality, to help them to realize life outside of the illusionary frame. You cannot see anything but death outside of the frame, when there is actually liberating world out there. So don’t pity us but we pity you.
We have this liberating and creative community, history, and culture;
while your culture encourages death when you step outside of this framework of ‘norm’.
So don’t pity us but we pity you, and WE help you to get out of the illusionary framework of the normality.

I do what I do, not to get a good job but to celebrate our differences.

Akemi Nishida is part of NYC disability community where her friends and she are learning and practicing disability justice way of community building. Akemi is a doctoral student in social personality psychology PhD program and an adjunct lecturer in Psychology and Disability Studies at City University of New York. Using frameworks of social justice studies and critical disability studies, her work focuses on the politicization of disabled people and community building in relation to intersecting oppression and privilege. She is also a performer in a project ‘GIMP’ by Heidi Latsky Dance and a starting member of DISLABELEDtv, a media organization by disabled youth/young adults. Through her activism-oriented scholarship and art, she works toward disability justice and larger social justice.