MARY MATHIS

Freshman year of college, Hannah was in a relationship where she was emotionally abused. At the time, she had no idea it was happening.

She was told, “You need me,” and unfortunately the statement was true. Hannah Soyer, who has Spinal Muscular Atrophy, SMA, or no muscle control over her body, needs her aids. Without them, she can't go to the restroom, cook food, or take her medication.

When Hannah realized her aid was taking advantage of her disability, she fired her. She noticed how different this action was from her friends with disabilities. They weren’t firing their aids that were emotionally abusing them.

Three years later, Hannah said she’s come to a revelation with the way able-bodied people see her disability. “What makes me disabled is our societies failure to accommodate me,” she said “How would our world and society function differently if . . . lets just say black queer female women with disabilities were the ones on top?” 

Today, Hannah is a senior at the University of Iowa, and lives in a clean, roomy apartment on Washington St., not far from campus. Her refrigerator magnets are telling of her personality: confident, motivating and obsessive about actor Misha Collins. Hannah’s presence is individualistic. On the left side of her head, straight hair that is ever changing in colors. The right side, shaved in army style. On her nose sits a small shiny stud, “I’m as liberal as you can get,” Hannah said.

Hannah’s creative and driven mind led her to a double major in Journalism and English, in the creative writing track that’s known as the nation’s best. She hopes to apply for the Masters of Fine Arts program for creative nonfiction writing, which is a three year grad program.
“That’s really my passion. Creative nonfiction writing” Hannah said. 

Hannah’s path leading to come to the UI was not the casual coming-of-age tale. When Hannah was a toddler, her parents realized she was having difficulty crawling. At 16 months old, she was diagnosed with Spinal Muscular Atrophy, SMA, a genetic disorder that removes the ability to walk because of the damaged motor nerve cells in the spinal cord.

“My mom was in denial for a while. My grandma had been investigating and put two and two together. She faxed my mom information on SMA and my mom didn’t touch the fax for weeks and finally she did and she was like . . . this is what Hannah has.” she said. 

Hannah wouldn’t let SMA stop her drive. “When I was in fifth grade, I made the decision to go to Oxford in England,” and my mom was like, “Oh god that’s not going to happen, that’s too far away” then when I was in high school, I thought, “Ok, Ill go to new York, I’ll go to NYU because at that time my goal was to be a playwright. If I’m going to be successful it has to be in New York”.

“Factually, it can be a lot harder to have a disabled child. But I think that we assume, ‘Wow that must be so hard’ It’s not hard because of my disability. It’s hard because society hasn't figured out how to fully accept it. There are two very different ways of thinking about disability,” she said, “You'll see both sides of thought in the community. One is the more medical side, “Were going to cure this!” and then there’s the more alternative thinking . . . maybe its not that bad if society would adapt,” she said.

Deciding on a practical college for Hannah was easy once she realized what was just two hours from Des Moines, her home town. “I just got older. I’ve always loved writing, always been a writer and so I thought…why go anywhere else? This is the number one writing school.” she said. It’s also important for her to be near to her parents who she’s close with, and her two cats, Ron and Hermione. “I love Iowa City, I hope to stay here for a really long time”.

“I’m very lucky that my parents raised me to believe that I am worthy of being treated right and receiving good care.” Hannah said.

Everyday life for Hannah includes an extensive process of hiring and scheduling helpers for herself. The use of helpers, or aids in the disabled community is a complex and relationship that able-bodied may have no idea about. Hannah receives funding from Johnson County for the Supported Living Community, Vocational Rehabilitation a government funded program, and wavers, also from the state of Iowa, to fund her helpers.

She also interviews all her helpers, and went as far as to make up a contract for them to sign before working with her. Her past experiences have enlightened her and her approach to hiring and involving herself with helpers.

“It’s a strange role someone has to play. I think you can be a good person and be a bad helper. I think you can be a bad person and a good helper . . . that ones probably more rare,” Hannah said, “One person has the upper hand . . . that’s just the reality of it.”

Sometimes Hannah will have a close friend that spend so much time with her, that they’ll get training to become her official helper. “My freshman year I made friends with a girl that was in my rhetoric class, and the next year I hired her, and now were best friends,” Hannah said.

“My most common fear is losing more and more independence,” a fear of Hannah’s, but not her greatest. “My greatest fear is probably Trump becoming president”. Hannah has a huge Hillary Clinton sign in her living room.

“Look at this election. I'm really beginning to have to come face to face with the fact that so many people - of either party, really, although yeah, I think one's more liable here - know nothing about living with a disability, and how much support someone like me relies on from the government in order to live,” Soyer said, “It’s fucking scary to have friends and family members who don't understand this, who can simply shoe me and others with disabilities under the rug when they're thinking about their political viewpoints. And so ultimately, that feels a little lonely”.

Media has been ever-present in this election, and Hannah says people with disabilities are forgotten about often in media representation. “No one talks about disabled women, which I would argue are some of the most unsafe groups of people. I know that there’s been studies that say the black female is the most endangered group, and I'm not arguing that, but I’m am saying disabled women get forgotten about and there are so many other societal issues for women, in particular, that really have a lot of weight for women with disabilities,” Hannah said.

One representation was impactful for Hannah. She read Holy Fools by Joanne Harris, that follows carnival workers in the 1600’s. “There’s a dwarf character that talks about how different and disabled people are treated so poorly, but there’s this legend that they used to be viewed as God’s holy fools, sent specifically from god to teach as Gods tools . . . and I just loved that.” Hannah has “God’s holy fools” tattooed on her side.

 
“One of the hardest realities that I've had to face is how incredibly ill-adapted our society is for people with disabilities, and how much people with disabilities are seen as "other." There's power in claiming to be "other," but also, it does alienate me” Hannah said.