What is it like to live with a disability? What do I want other people — younger people — to know? What do I see ahead? What are the ethical boundaries for telling other people’s stories?
These are some of the excellent questions posed by DearJulianna, #CrippingtheMighty, and #TheFutureIsDisabled. (Carrie Ann Lucas’s blog post currently carries the coveted — by me — title of, The Blog Post I Love Because It’s So Well-Written I No Longer Feel Like I Need to Take On This Difficult Topic Until I Want To.) People with disabilities are writing, reading, producing, performing, and arguing like nothing I’ve witnessed in 50 years. It’s wonderful and it makes me want to hide out under a blanket for a while and just let my mind wander.
When I can get enough mind-wandering time clocked, I work through stories that are the made-up kind: fiction. They’re stories that are “about” my life the way jambalaya is “about” sausage, rice, and a whole bunch of other stuff. I can’t seem to tell the truth without lying, which is “fiction” in a nutshell and why Hermes, that liar (and inventor of lyres), is the god of storytelling.
In terms of privacy, even badly written fiction is different from posting a detailed or disparaging description of your child who has a disability. But in thinking about who gets to write about who, and how, and why, I remembered a problem I’d had with conveying certain information about my main character, an adult woman with a disability. Me! Not me!
The information involved her early childhood and family background. It couldn’t go through her point of view because she would have been too young to remember it. Simple exposition was clunky. Her mother was already in the scene so I separated them and told it through her mother’s point of view. The mother — like all of the family members — was based on a real person. But I didn’t go this route just because it solved a problem. I wanted to express my appreciation to my mother and my father.
I write disability-centric material because I write and one very specific type of disability is what I know, deeply. It’s not all I know but it’s a rich vein to mine. I didn’t sit down to write a novel only because I wanted to show what living with a disability is like; I wanted to imagine what not having a disability was like and what it could be like to be a parent to a child with a disability.
The things I want people to know about disability are easier to show than tell. Fiction’s reliance on imagination and empathy makes them feel like the right tools for the job.
Here is the excerpt that has since been edited:
After Gretchen disappeared from view the long habit of motherhood kicked in and Alice wondered why she had just let this man walk off with Gretchen without any real explanation. Your daughter is thirty-five years old, she reminded herself.
It didn’t help. Too polite, too damn polite, that was always where she went wrong. She’d tried to raise both her children, but especially Gretchen, to speak up for themselves, not to be rude, but to explain what they needed and to ask for help. It had worked, both Gretchen and her older brother had gone off into the world and managed well enough. When Derek got married and they had the baby, it was nice they’d settled close by. But they all had to have their own lives.
But it was hard with Gretchen, harder than with Derek. “I can’t believe you let her go around like that,” Mrs. Fogerty said to Alice once after seeing Gretchen walk down their street. Gretchen was eight. She wanted to go by herself to the town’s library when the last ice had melted and it wasn’t slippery out. Not an unheard-of idea in a small town back in the seventies. Every day Gretchen saw Derek, only two years older, and his friends out on their own, riding bikes. No, Alice didn’t in fact want her walking around town alone but that wasn’t any old busybody’s business. “I can’t lock her in the house,” she said. And left it at that. The woman didn’t know Gretchen at all.
It wasn’t that Alice thought her instincts or judgments were so wrong, it was that so many of them contradicted one another. Ideas that sounded sensible – a girl like Gretchen will need protection, extra encouragement to be independent – were nonsensical in the face of the real, not the theoretical, daughter. Take her first day of pre-school when she was three. She was unsure Gretchen was ready to be left there but she wanted her to have the chance to play with other kids and to have the physical therapy they offered. Alice had barely said she would be back at noon when Gretchen turned around and walked away, her gait uncertain, arms held out for balance, but making a beeline for the kitchen area. Alone. One of the teachers smiled at Alice, who shrugged and smiled back. The teacher laughed and said, “You just never know.”
Raising a child was like throwing things – things you hope will stick – at a moving target. Alice had to keep her eye on the target, not the thing she was throwing, and she was fortunate that her eye was fixed so firmly on Gretchen. It was why she noticed, when Gretchen was still a tiny baby, that she hated to be rocked, that her eyelids were a little droopy, and that the muscles in her face were slightly asymmetrical. She and Otto, Gretchen’s father, weren’t too concerned at first. But when she didn’t start crawling they began to worry; their pediatrician eventually referred them to a neurologist.
It would have been easy to lose sight of Gretchen when she became the focus of so much medical attention. The first neurologist said flatly she had brain damage and would never walk. After hearing that news, Alice and Otto brought their daughter home, slowly emerged from the cloud-bank of clinical certainty, and started looking for other opinions. Over the next two years, as Gretchen was seen by doctor after doctor, Alice could have forgotten what her own daughter looked like because so many different views of her were presented.
Of course that first doctor would not have understood how Alice saw him; to this day she remembered him wearing a black cape instead of a white coat. He told them after twenty minutes with Gretchen that all signs pointed to cerebral palsy. He had paused a moment to let that sink in, sitting absolutely still in the tall-backed chair in his office. They hadn’t even gone to an exam room. He had Gretchen’s records before him, the well-respected expert, and said he’d reviewed them carefully. He’d done what they already recognized as a cursory neurological exam but he did it while Gretchen sat in Alice’s lap, a confirmation for what he already knew.
All signs pointed to cerebral palsy and that meant brain damage. They needed to think about where it would be best for her to live. They had another child who was fine, correct? They could have another. Alice was speechless with rage. This was a hospital in the late sixties, not some past century horror show, and this doctor was telling them to consider putting their little girl in an institution. Try for a better model. “She lives with us,” Otto said. His slight German accent made him sound as weighty as the doctor. “Walking is of little consequence in the larger picture and ‘brain damage’ is a very general description. Perhaps you can explain what makes you so certain.”
The doctor had his reasons, none of which had conclusions that were borne out, but that wasn’t the point. The walking wasn’t the point, though they hoped she would walk and she did, a little bit, before she was four, after much patient practice with Alice and some skilled physical therapy. Brain damage would have grieved them more, much more, it was true, but even that would have belonged to a person; it would have been Gretchen’s condition, their daughter’s.
The point was that he thought nothing of Gretchen, nothing. Alice was convinced that even though his eyes had rested on her, he had failed to see her. She didn’t care if it was because he had seen so many other children before or had seen so many statistics in journal articles or because he was just a bastard who somehow managed to be celebrated in his field. He tried to get them to see her as he did, which was not at all. Look at her. Look at her. He couldn’t have looked at her and yet he could have convinced them he was right. If they had looked away, over there, to where he was pointing, There is the daughter you were supposed to have.
By the time Gretchen was three, they’d found another neurologist, a kind woman whose accent was like Otto’s, and she brought them to the next test. Gretchen was found to have scoliosis, curvature of the spine. The right side of her body was noticeably stronger as a result of the cerebral palsy (an atypical case of it, since no signs of brain damage had shown up on the EEG). They met with an orthopedist. Exercise would not be sufficient. It wasn’t necessary to think about fusing the spine surgically. Yet. That left bracing. The Milwaukee back-brace, as the style was called, would extend from a metal collar around Gretchen’s neck down to a snugly fitting plastic girdle that ended where her torso met her legs. It would be fashioned by first making a plaster-cast mold of Gretchen’s torso, which would guide the craftsman in the hospital’s brace shop. The finished brace would have strategically placed pads to press on the appropriate vertebrae, and if successful, prevent further curvature before strength-building exercises did their work.
By this time Gretchen was four, they’d decided she would wear the metal and plastic contraption twenty-three hours a day. Some patients wore them until their early twenties, if their bodies could not be strengthened enough to protect themselves. In a sense, she would be lucky if this were the case because it would mean surgery had been avoided. Fusion surgery, in which metal rods were attached to the vertebrae as fragile stems were staked in a garden, involved a full-body cast and one year flat on her back in bed.
This time, Alice and Otto saw compassion in the faces that delivered their harsh judgments. The neurologist and the orthopedist knew the weight of what they were saying. But they knew, too, that the alternative was risking Gretchen’s lung capacity because the C-shaped curve caused by the weakness of the muscles supporting her upper spine would swerve right into her chest cavity – and her lungs.
Again, Alice and Otto went home in a daze. They didn’t know that the brace would work, but they didn’t doubt it was necessary. What they doubted was whether, in the end, it would keep Gretchen from a long and painful surgery. The thought of forcing their four-year old to spend every hour but one in the brace, without knowing it would be doing any good….
“It will be doing good,” the neurologist said on the phone. “We know the scoliosis will progress without it.”
“But it doesn’t sound as though you know how fast,” Alice said slowly. “She’s only four. You know what a year means at that age.”
The neurologist and the orthopedist would not budge. The scoliosis demanded she wear the brace and it could not wait. But Alice and Otto knew something else: they were the rulers in their daughter’s world. They decided that Gretchen would wear the brace from that time forward. But she would spend only half of her time in it – while she slept.