When I hear the term disability, it’s not about how I think; it’s about how I feel: alert. People living with disabilities face a daily struggle, existing within a society that often sees them as dysfunctional or lesser human beings. They have faced ableism at every turn, and there seems to be a countless flow of dim-witted ignoramuses who wish to impede social progress and the fight for equality. Putting all of that aside, people with disabilities still have to constantly face the obstacle that is their disability itself. If we as a people seek to break the barriers of inequality, we must first and foremost be aware of the situation, as well as the power we possess to change it. Once aware, it’s important to maintain constant vigilance and be ready to fight when ignorance and discrimination rear their ugly heads; hence the word “alert”.
I have known many people living with disabilities in my life, largely thanks to my mother. Since middle school her best friend has been a man named Robert, who has been living with Crohn’s disease since he was 9 years old. Doctors said that his case was one of the worst they had ever seen; he’d been constantly missing school since the fourth grade, and his illness is so severe that it has impeded him from living the life he might have had otherwise. He wasn’t expected to make it out of his 20s alive, but here he is at 46. Stunted growth, a broken back, ulcers in his mouth, osteoporosis, arthritis, and he has less than a foot left of his digestive tract after numerous surgeries. But so far Robert hasn’t let any of that stop him. He was the man of honor at my mom’s wedding, is my younger brother’s godfather, and currently tends to a lovely garden in Manchester. He’s one of the most brilliant people you’ll ever meet, the kind of guy who can make a perfect pie crust, explain the taxonomy of plants, make sense of both dense medical texts and arcane religious history, and grow just about anything on earth. He’s a wonderful human being and I can say with absolute confidence that I have had a better life knowing him than I would have without.
When my mom went off to college, she made a great new friend in the form of Brad Rothbart, a fellow Sarah Lawrence freshman who had been living with cerebral palsy his entire life. He studied theatre and graduated with a Bachelor’s in Women’s Studies, and just under a decade ago received his Master’s in Drama from Stanford University. He worked as an actor for a time, but has been a self-employed writer since 2005 and lives with fiance Kristin. He’s a fiercely vocal liberal, and when he heard that I was in Cadet Teaching (my high school’s student teacher program) he contacted me immediately out of concern that I had joined some sort of military organization. He had an extremely well-written statement prepared, and was willing to back it up with educated discussion and facts, because that’s the kind of person he is. He’s one of the happiest people I know, and has been that way despite being unable to move and talk with the same alacrity the rest of the world is accustomed to. On top of that, his inability to complete most forms of taxing physical labor has left him in some pretty tough financial spots over the years because it was so hard to find a job he was physically capable of. I haven’t seen him since I was visiting a college in Pennsylvania almost two years ago, but my mom has said that he’s doing very well, and that he and Kristin are getting married soon. That is a wedding invitation that I eagerly await.
The biggest influence in my life in terms of disability and special education has been my younger sister, Ruby. About five or six years ago Ruby started developing a disorder known as misophonia, which is literally “hatred of sound”. There still hasn’t been much research done of the subject, but more and more is beginning every year. This past year the Misophonia Association held its third conference in Chicago, which my parents and sister attended. Basically, the disorder consists of being triggered by certain sounds. For my sister, like most who suffer from misophonia, the initial triggers were sounds made by people eating. It seemed insane to us at the time Ruby would run screaming from the dinner table and slam the door to her room night after night, but that’s because none of us, Ruby included, had ever heard of the disorder. While the specifics differ for everyone, the common symptoms when triggered are anger, anxiety, aggression, irritation, and fear, all to the most extreme. When combined with sensory processing disorder, it can even create real, physical pain for the sufferer, such is the case with my sister. Living with misophonia completely changed Ruby’s life, but also the lives of everyone in my family. We don’t eat food outside of our rooms unless Ruby’s either in her room or downstairs, but the disorder has changed beyond that. Misophonia is a progressive disorder, meaning that it is liable to worsen the longer time goes on. There is currently no known treatment for it aside from therapy, anxiety medication, and mood stabilizers. It started with the sound of people smacking their lips, but quickly moved on to crunching, munching, chewing, sucking; basically every sound that the human mouth can emit while eating. But that’s not all. Ruby is also triggered by certain language sounds, such as stressed “s” sounds. Reading that sentence aloud would be like a nightmare to her. Any abnormal sound involving the tongue or lips (clucking your tongue, pursing your lips and sucking in air between them so it makes a squeaking sound) can be agonizing. She’s been learning coping skills for over four years, but is still struggling daily to implement them. Now just imagine the nightmare that is the classroom.
Ruby became a high school freshman last year. She had struggled through middle school, waging an eternal war with my parents to try and not attend. They would beg, plead, punish, and compromise, and my heart swells with both pride and pain when I think of how much she must’ve suffered. Eating in the cafeteria was out of the question. Instead, she’d sit alone in the main office to eat her lunch, occasionally accompanied by a secretary or the school nurse. Imagine the nightmare that is a school classroom, kids talking and eating and drinking all of the time. She even had a math teacher who spoke with a lisp and smacked her lips incessantly. By the end of freshman year, Ruby was in the classroom for two hours a day, any odd number of days a week. Ruby May Sea Rose Sage-Robison is one of the toughest fighters I know, because she was the one who forced herself to go to school. My parents tried to see if she would be homeschooled, but she refused time and time again. She wanted to stay in school, both because she needed to make friends and because she loved to learn. Ruby is an amazing writer, and when I attended her IEP meeting for her transition from the middle school to the high school, her English teach her sang her some of the highest praises I had ever heard, demanding that Ruby be placed in an Honors English class. The biggest problem in high school was the classroom itself. My parents placed their faith in Bethel High School, and they were let down tremendously. They weren’t made aware of all of their options, as mandated by law, and the school refused to let Ruby leave the classroom permanently for almost the entire year. Our family friend, who also happened to be Ruby’s second grade teacher, recommended to my parents that they hire a Special Education Advocate, and my mom says that is the best decision that they possibly could’ve made. This advocate found so many flaws with the way the school was handling the situation that it was repugnant. They moved Ruby from the classroom to a small work room, but would not let her be in the room alone, instead insisting upon placing a tutor in the room with her, who was untrained in special education and entirely uninformed about Ruby’s condition. At one point my mom became so infuriated with the school system that she tearfully threatened to remove Ruby from public school and begin homeschooling her. In response, the school called Child Protective Services on my family, reporting Ruby as truant despite the fact that she had been attending school erratically, as mandated by her IEP, for months. Unsurprisingly, the Connecticut Department of Children and Families found that my parents were doing nothing wrong, but that was the last straw for Bethel High School, and Ruby began homeschooling this year.
We’ve stayed in contact since I left to come back to school this semester, and she says that she’s enjoying being home schooled, describing it was “much less stressful”. Whenever I’m with Ruby, I’m always alert for things that may trigger her. I even catch myself doing it when I’m at school, noticing triggers left and right. And in the face of ignorance, I am always ready to combat it with knowledge and a passionate loyalty to my sister. But regardless, whenever I hear the term disability, I think, I feel, I am: alert.