Disabled young people will be proud to see themselves reflected in this hopeful, compelling, and insightful essay collection, adapted for young adults from the critically acclaimed adult book, Disability Visibility: First Person Stories from the Twenty-First Century that "sheds light on the experience of life as an individual with disabilities, as told by none other than authors with these life experiences." --Chicago Tribune, "Best books published in summer 2020" (Vintage/Knopf Doubleday edition).
The seventeen eye-opening essays in Disability Visibility, all written by disabled people, offer keen insight into the complex and rich disability experience, examining life's ableism and inequality, its challenges and losses, and celebrating its wisdom, passion, and joy.
The accounts in this collection ask readers to think about disabled people not as individuals who need to be “fixed,” but as members of a community with its own history, culture, and movements. They offer diverse perspectives that speak to past, present, and future generations. It is essential reading for all.
An Excerpt fromDisability Visibility (Adapted for Young Adults)
If You Can’t Fast, Give
I was born and raised in the United States. I spent my school days in beautiful New Jersey and my summers in the war zone known as the West Bank. The first Ramadan I ever fasted was no joke. I was eight years old and on summer vacation in my parents’ village. It was late June, and the Middle East is a sauna at that time of year. During Ramadan, those observing the fast abstain from food, beverages, smoking, and kissing. I have never had an issue with fasting. I’m one of those crazy Muslims who loves Ramadan.
I have cerebral palsy. That means that technically I am exempt from fasting, even though it is one of the five pillars of Islam and extremely important to the faith. The Qur’an states clearly in Surah 2, Ayat 185 that those who have medical conditions are pardoned, so I was treated like a champ for fasting. My family was over the moon, and I refused to show any weakness. I knew that by fasting against the odds I had been born with, I’d totally get into heaven and, more important, would get amazing gifts for Eid. Eid is the celebration that marks the end of fasting. Muslims celebrate for three days, because after thirty days of fasting, one day simply isn’t enough.
Regardless of the heat, it’s fun to fast for Ramadan when you are in a country where the majority of folks around you are also starving. Ramadan is not as much fun in America, where you are the only one fasting. In my day, teachers weren’t as culturally savvy as they are now. I had teachers who genuinely feared for my life and were convinced that I was being forced by my horrible Muslim parents to fast. They’d try to slip me a butterscotch candy at lunchtime. I would shove their candy away and tell them not to push their beliefs on me. I could eat whatever I wanted at sunset, thank you very much.
Every Ramadan, without fail, my mother has given me the option to not fast. Those who cannot fast during Ramadan get to make a donation that will feed a hungry person for the duration of the holy month. If you cannot afford to do so, you should instead perform any acts of charity within your capability. My mom has donated on my behalf every single year I have fasted, just in case it ever got to be too much and I had to give up. How is that for faith?
My most challenging Ramadan came in the form of a ten-day road trip in 2011, in America’s Deep South, on a comedy tour called “The Muslims Are Coming.” Ramadan, which moves back ten days each year, happened to land in August. I was filming a documentary in addition to performing nightly. We would spend all day on the street doing interviews with the locals, who weren’t too fond of Muslims. For the first time in my history of Ramadans, I complained. I was hot, thirsty, and tired of bigotry. Some nights I didn’t break my fast until 10:30 p.m., but I survived. I broke down and broke my fast only once on tour. We were at Elvis’s house in Tupelo, Mississippi. The statue of the King spoke to me and I realized if I didn’t drink water I would drop down dead just like he did. I did not want to die where Elvis was born. It’s okay to miss a day or five, if you are sick or traveling, or are on your ladies’ holiday. You then have a whole year to make it up. Some Muslims are slick and do their makeup days in December when the sun sets at, like, 4:30 p.m. and they have to fast for only six or seven hours.
On July 10, 2013, after three decades, my days of fasting came to an end. As I mentioned, I have cerebral palsy. One of my symptoms is that I shake all the time, just like Shakira’s hips. On the first day of Ramadan 2013, my shaking got the best of me. By noon, I no longer had the coordination to tweet, and by the time I broke my fast at 8:30 p.m., I could barely breathe. I knew that I had fasted my last day. The next morning, the water I drank tasted like poison. It felt so wrong to quench my thirst during the daylight hours. Ramadan is something I strongly associate with the happiest times of my life, so I felt like a tradition was lost.
I am not ashamed that I can no longer fast, but I know many who are, even though they are excused for God’s sake. I miss fasting, but I’m happy to take on my newest mission of reminding those who can’t fast that there is no reason to put themselves at risk. Muslims fast so they can suffer a little. It is important not to die in the process. Instead, those who can’t should channel their devotion into charity. This will not only help you stay healthy but also will help someone who is genuinely suffering. Those who are blessed with the health to fast, please don’t interrogate your fellow Muslims about their hunger status. It is impolite to ask others if they are fasting unless you are in the process of offering them something to eat, and sometimes you really don’t want to know the answer.
Contents note: bullying, suicidal ideation
There’s a Mathematical Equation That Proves I’m Ugly
Or So I Learned in My Seventh-Grade Art Class
I am ugly. There’s a mathematical equation to prove it. Or so I was told by the boy that sat behind me in my seventh-grade art class.
I’m going to stick my pencil through the back of your eye, he told me, laughing. It’s not like you could get much uglier. Even the teacher thinks so.
Two years earlier, a different boy, whose name I can no longer remember, angrily asked me what was wrong with my face after I beat him in a game of handball during recess. You have the weirdest set of eyes I’ve ever seen, he told me. When my teacher overheard this, he sent the boy to the principal’s office, where I would later go and give my side of the story, only to be told that I needed to not be so sensitive.
So when the boy in my art class continued poking me in the shoulder with the back of his pencil, I said nothing.
My art teacher that year was a heavyset black woman named Ms. J. She had a laugh so loud, it echoed down the corridor. She wore beautiful bright colors and taught us about artists and movements that I had never heard of; she encouraged us to explore what art meant to us both collectively and as individuals.
My school was filled with children who came more from upper- than middle-class families, the offspring of doctors and business executives and athletes. Though my family was well off, I felt out of place with children who were taken care of by nannies, who had fathers who attended prestigious universities and were frequently away on business trips. My father was a cabinetmaker and owned a construction company. My mother issued building permits in the next town over. Neither had more than a high school diploma. It was a town of mostly white people, so having a black woman as a teacher felt almost cultural, in a way that only sheltered white upper-middle-class children would ignorantly understand.
Every week, Ms. J required students to research an artist, a movement, or a piece of artwork that we were drawn to. Art isn’t about what you see, she would tell the class. It’s about what you feel. Show me what you feel. We had to research and write a one-page report explaining our topic and what it meant for our art. After school on Wednesdays, she would hold studio time, when students could come in to work on new projects and discuss the things we had learned in class. It was usually just me and a handful of other students I had become friends with.
One week, Ms. J spent the first half of class discussing the role of beauty in art and how the very idea of beauty was subjective and dependent upon the interpretation of the audience. She taught us about the golden ratio, the mathematical equation that, in many ways, explained beauty. During the Renaissance period, artists would use an equation to create balance, symmetry, and beauty in their work. It was first explained more than two thousand years ago in Euclid’s Elements and describes a sequence found frequently in nature. Based on the Fibonacci sequence, the ratio combines symmetry and asymmetry in a way that is alluring and attractive to the eye; this is why it is often employed in design, architecture, and nature. The closer an object’s measurements were to the golden ratio, the more beautiful it was.
Days later, during a discussion on facial structure and drawing portraits, Ms. J mentioned the golden ratio again. She told us that scientists had studied this equation, using the formula to quantify beauty.
“They analyze and they measure,” she told us. “They measure the hairline to the root of the nose, right between the eyelids. And from right between the eyelids to the base of the nose. And from the base of the nose to the bottom of the chin. If these numbers are equal, the individual is said to be more attractive.” She gestured as she spoke.
She told us that the ear should be the same length as the nose and the width of an eye should equal the space between the eyes. In order for a woman to be considered beautiful, the length of her face divided by the width should have a ratio of 1:1.618. Ms. J showed us work by Renaissance artists like Raphael and Botticelli.
I had never understood mathematical equations or ratios, so the only thing I learned from her lesson was that these were the beauty standards a woman must meet if she wanted to be deemed worthy.
Ms. J went further, telling us that additional research into the role of the golden ratio in determining female beauty reveals the translation of these calculations into an attractiveness ranking system. Individuals, mostly women, were rated on a scale of one to ten, based on the symmetry of their facial structure, with most individuals scoring between a four and a six. Never had an individual been ranked a perfect ten, but still we lived in a society that found the need to measure and rate and rank and score.
I couldn’t help but think that if my appearance had been measured against the golden ratio, my formal rating wouldn’t have been higher than a two.
I grew up having every flaw pointed out to me. I grew up believing I was wrong. It’s part of the territory that comes with being born with a facial disfigurement as a result of Crouzon syndrome--a rare genetic disorder where the bones in the head do not grow normally. My eyes were too far apart, too crooked; my nose was too big. My jaw was too far back; my ears were too low. There were regular appointments with doctors and surgeons trying to fix me and my twin sister, who was also born with Crouzon syndrome. Some of these were for medical purposes, others for aesthetics.
I would sit in a room while doctors took pictures of my face from every angle. They would pinch and poke, circling my flaws. I would sit and let them pick apart my every flaw. And I wanted it, I did.
“Fix me,” I would beg.
They would do their best.
I’d have surgery, recover, and return for more pictures, more circling and more detailing of every flaw. I was obsessed with symmetry, obsessed with bridging the gap between the person I was and the person I felt I should be.
The afternoon the boy in my seventh-grade art class told me I was ugly, I told my mother that I wanted to die. She took me to a therapist the following day.
My therapist’s name was Beth. She was a middle-aged woman with curly red hair that fell just past her shoulders. She had a round stomach and round glasses and almost always wore green. I would sit in Beth’s office, play mancala, and tell her of my dreams to travel and write. We almost never spoke of my appearance.
When I entered Beth’s office that day, she sat facing the burnt-orange plaid couch that looked straight out of a 1975 home furnishings catalog. We did not play mancala. Instead, Beth looked directly at me and asked me if I was happy.
I did not know how to answer, so I cried. She took a tissue from the small table next to her and gave it to me, listening as I sobbed. When the tears stopped, we sat in silence for several minutes.
“It’s like when you reread the same sentence over and over again without understanding what it means,” I said finally. “That’s how I feel about my life, about what I look like.”
She nodded as I spoke, looking at the tablet and pen sitting next to the tissues on the small table. She began to reach for it but stopped. Instead she folded her hands and put them in her lap.
“I don’t understand it,” I continued. “These things, they just keep happening, and I know it has to mean something. It has to. I want my suffering to mean something. I want this pain to matter.”
She responded by giving me an assignment. She told me that she wanted me to take a picture of my face every day for the next few weeks. She told me that I had no connection with my physical self, because my appearance had undergone drastic changes so many times. This made sense to me, and I was surprised I had never made the connection.
“You don’t have to show these to anyone,” she told me. “Just take them for you.”
I was skeptical, but agreed.
I used to cry at the sight of a picture of myself. The tears would consume me, and I would spend the following days refusing to leave the house. Seeing images of the person I was made me angry.
I was ugly.
When I was nine years old, my twin sister and I were interviewed by reporters from the French edition of Marie Claire. Two women came to our home. My mother put us in dresses and curled our hair, and we sat at the dining room table, which we were allowed to do only on special occasions. The women took pictures of us and asked us questions about our lives. All I can remember of them is their accents and the way I felt confused when they kept implying that I was different.