Living with an invisible disability

 

Being different is still a taboo in a society that claims to value individualism, while actually prizing conformity. People tend to judge things and people that they don’t understand, without knowing the whole story. When a child acts up in public, people tend to blame the child’s parents. They don’t know the parents, the children, or the reason for the child’s behavior. If the child has a disability, the child may be so exhausted from simply trying to function that he melts down. A meltdown may be loud and dramatic, and may appear to be misbehavior. People with learning disabilities, attention deficit/hyperactivity disorder, or mental health issues have “invisible disabilities.”

The disabilities are not obvious, as they would be for people who use wheelchairs.

I was such a child. The child who was overwhelmed by noise and bright lights and people brushing against me. The child who stared out of the window in school, not paying attention to the teacher.

I have invisible disabilities. I did not know about them until I was well into my 30s. My disabilities are called “auditory processing disorder,” “sensory processing disorder,” and “hyperacusis.” Sensory processing is the way in which the nervous system interprets messages from the senses and translates them into a response. People with sensory processing disorder have difficulty processing the sensory messages, which includes touch, sound, vision, smells, taste, proprioception (having to do with muscle and joint movement and knowing where your body is in space), vestibular (balance), and interoception (having to do with internal organs).

When I grew up, these disabilities were unknown. As a child, I lived in a world of image fragments, a world that was all sensation. At the same time, I lived in a frightening world of sounds: loudspeakers and screaming voices and scratchy, off-key records, and pounding music that blasted my head and took over my heartbeat. I was able to read stories but I could not do phonics. I could not ride a bicycle until I was twelve years old, due to balance issues. I have never had the capacity to do the selective listening that neurotypical (“normal”) people do automatically. Listening in a noisy environment is exhausting and painful. When I am overstimulated, my proprioceptive system goes off kilter and I lose awareness of where my body is in space.

From an early age, I was considered to be abnormal. I was bullied by the other children and I was sent to see specialists to determine what was wrong with me. To me, it felt less like “help” and more like “punishment.” I did not know that I perceived the world differently than my classmates. The adults tested, analyzed, and wrote reports. In eighth grade, I was sent to a school for children who were labeled as emotionally disturbed. Today, we would recognize that some of the kids had Asperger’s Syndrome or other forms of autism, some had learning disabilities, and others had bipolar disorder. After a year in that school, I went back to public school, where I continued to struggle with problems that I did not understand.

Processing disorders and other learning disabilities are lifelong disabilities that affect not only the way we learn in school but also the way that we experience life in general. As an adult, I continue to live in the world of image fragments that had comforted me when I was a child. I become a journalist so that I could share other people’s stories. My career died, so I worked at various jobs, and the supervisors said words that flowed into each other without meaning. The phones jangled, and the machinery hummed, and supervisors complained that I failed to follow directions. When I wasn’t at work, I walked past decaying buildings. I wanted to write about the broken down city, but the image fragments defied my efforts to turn them into words.

Finally, I found professionals who were able to explain to me why sounds hurt so much and why words shattered like glass. They gave names to the pain and confusion that I experienced: auditory processing disorder, sensory processing disorder, and hyperacusis. I visited speech-language pathologists at SUNY Buffalo, who helped me but didn’t cure me. There is no cure for any of these disabilities. There is just living with them and hoping that friends and family will be able to accept, support, and maybe even embrace someone who experiences the world in a way that they do not.

 

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