The National Youth Leadership Network, an organization run by and for youth with disabilities, is proud to announce the launch of our first ever zine.
Our zine focuses on Disability Culture and what it means to us. Here you will find stories of our lived experiences growing up as disabled youth and how they have shaped us. We hope you enjoy them.
We will begin putting together the next edition of our zine soon. If you would like to contact us about our current zine or our next zine edition, please email Sara Moussavian at saramoussavian2011@
gmail.com or Emily Holmes at cinderella_em1@
The National Youth Leadership Network works to build power and community among youth with disabilities. We are led 100% by and for disabled youth. Anyone can be a member. To join NYLN, visit www.nyln.org. To contact us, please email NYLN at info@NYLN.org or call us at 866-480-6565.
[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 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 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 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. 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 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. 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 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 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 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.