Beyond Labels

Creative Nonfiction by Liam O'Brien

Ableism

Simple discrimination against people with disabilities. Discrimination and prejudice against people with mental or physical disabilities. Seeing disabled people as inferior to non-disabled people. Inaccessible office spaces, jokes, slurs, job denials based on disability, and more examples occur daily right in front of you.

Bedridden        

There is trauma of being in a body that suddenly loses function. Each day with a similar routine, being captive in your own body, watching the sun’s rays filter through the Venetian curtain, and the weight of your own existence pressing down on your body. No one understands being lonely within your disability due to fatigue or overstimulation. Disability chains you and traps you to your bed, and all that’s there to alleviate your pain is a weighted blanket, prop-up pillow, and reruns of HGTV that you’ve already seen. Disability, whether visible or invisible, steals your freedom and you become a prisoner of your deteriorating health.

Campus

When constructing buildings now, accommodations are considered. However, there are many buildings across the University of Kentucky campus that are old and are not up to par in accommodating people with disabilities. Funkhouser, for example, was built in 1942 and only has one wheelchair ramp in a very inconvenient location. Most places across campus do not have handicapped parking. If you want to see a show at the Singletary Center, you will have to park behind the Stuckert Career Center or Memorial Coliseum. Construction on Rose Street for four years forced students to take more complicated routes to reach classes.

Death Penalty

The Supreme Court ruled in Atkins v. Virginia that executions of individuals with intellectual disabilities were unconstitutional under the Eighth Amendment’s prohibition of “cruel and unusual” punishment. This 2002 ruling was too late for many individuals, people like Jimmy Dill. Mr. Dill was accused of shooting someone during a drug deal. The victim did not die, but Jimmy Dill was eventually charged with capital murder. The Atkins ruling allowed for states to have broad discretion in determining who qualifies as intellectually disabled. Alabama determined Jimmy Dill did not meet these criteria, making him eligible for capital punishment. On April 6th, 2009, Mr. Dill was strapped into the chair and executed.

Evil

From Captain Hook to The Penguin, and even Count Rugen, disability in media is commonly associated with villainy. A hook for a hand, hunched back, and an extra finger might not be explicitly disabled, but these abnormalities are associated with roles as villains. This is a problematic trope that has persisted for many years. This portrayal perpetuates harmful stereotypes and contributes to the stigmatization and marginalization of disabled people in society.

Ferris Bueller (No Days Off)

One of my symptoms is chronic migraines, and I often use sunglasses to help alleviate the pain. All of my teachers were informed about this, yet they all still asked about them and were often inconsiderate. I had just returned to school after three months of traveling from hospital to hospital, and the school counselor walked into my social justice class looking for me. I still remember his words: “I couldn’t even notice Ferris Bueller back there.” This invisibility was common. The nickname Ferris Bueller spread throughout the school, mostly used by my psychology teacher, and a teacher I would only see in the halls. This was not a name I enjoyed, and I confronted the counselor who started it. He did not mean any harm and did stop using the name. Unfortunately, the damage was already done, and Ferris Bueller echoed in the hallways.

Genzyme

When I was a kid my mother worked for Genzyme, a biotechnology company. I still vividly remember “Take your son to work day.” The day started off with Dunkin’ Donuts iced coffee and a walk over the Charles River. I would sit in the office playing with the toy bikes I brought, and out of the corner of my eye I saw an exhausted mother looking into a computer, but when she turned around all I could see was the largest smile. Little did I know my mom was diagnosed with Lupus, an illness where the immune system attacks healthy tissues and organs. Despite this, she still took me to all my doctors’ appointments, picked me up from school, cooked dinners, and watched my soccer games. Ten years later she became my biggest ally and someone I could talk to about the problems I was having.

Inspiration

While labeling a disabled person as an inspiration may come from a good place, it can also be harmful. Too often it reduces disabled people to objects of inspiration rather than recognizing them as a person with an intersectional identity. Disabled people do not exist solely to motivate others. Being called an inspiration can understate the systemic barriers that they face in their lives.

Joji: A Glimpse of Disability

Joji is a very successful producer and singer who is known for his hit “Glimpse of Us” that reached the top ten on the Billboard Hot 100. Joji has publicly announced that he suffers from a neurological disorder that he wants to remain private. This disorder gives him stress-induced seizures and sensitivity to bright lights. Joji has produced four albums but does not tour as often as many of his fans would like. He is often seen taking long breaks during his concerts, and even though some of his fans know about his health problems, they still get angry at him for not giving his all. There was even a large controversy during Joji’s 2022 Coachella performance where he stopped midway due to health conditions. While some fans bashed the festival for not taking his health into consideration, other fans were displeased and called him unenthusiastic when he eventually returned on stage. Joji serves as a reminder that everyone needs to be patient with people with chronic illnesses.

Lorenzo’s Oil

This 1992 film follows the true story of Augusto and Michaela Odone who seek a cure for their son Lorenzo after he is diagnosed with adrenoleukodystrophy (ALD), a rare and fatal neurological disease that at the time had no available treatment. In response, the parents took it upon themselves to research ALD. Despite having no medical training, their efforts led to the development of Lorenzo’s Oil, a treatment that slowed the progression of the disease. A study in 2005 showed that Lorenzo’s Oil prevented the onset of ALD in two-thirds of boys who would have otherwise died from the disease. Augusto and Michaela serve as a reminder that I would not be here today without my parents’ perseverance and continued support.

Miss Diagnosed

“You’re just tired,” “You’re overweight,” “You’re just on your period.” These are all common responses that women hear from their doctors. Most data used today in medicine is based on men, male animals, or male cells. Of those diagnosed with autoimmune diseases, 78 percent are women. Women are three times more likely than males to develop rheumatoid arthritis and make up two thirds of people with Alzheimer’s disease. Women are twice as likely to suffer chronic pain conditions such as fibromyalgia and chronic Lyme disease. A 2012 study of 171 women who received endometriosis diagnoses found that the average time for their diagnosis from the start of their symptoms was 10.4 years and 74 percent of participants received one misdiagnosis. They then go to a new doctor and hear, “You’re crazy,” “You’re faking it,” “It’s not real.”

Out of Commission

For an entire year my lower extremities felt like they were wrapped in barbed wire. This year included countless doctors, misdiagnoses, and accusations of faking my illness or it being all in my head. Despite this discouragement, I endured relentless tests, MRIs, medications, and therapies hoping for answers. These answers were finally found in an intensive inpatient rehabilitation center, the Functional Independence Restoration (FIRST) program at Cincinnati Children’s Hospital. I was diagnosed with Complex Regional Pain Syndrome (CRPS), a chronic pain condition believed to be caused by a dysfunction in the central and peripheral nervous systems. The FIRST program followed a strict schedule of two hour-long physical therapy and occupational therapy sessions per day. This exhausting schedule increased my pain, but I stayed resilient. It functionally improved, and within a few days at the FIRST program I was able to walk without crutches for the first time in months.

 Professor Singer

“I would definitely kill a disabled newborn baby, if that’s in the best interest of the baby and of the family,” Professor Peter Singer said in an interview with The Independent. Singer views disabled babies as having no value. He also believes it should be lawful under some circumstances to kill any individual who has severe cognitive impairments. He doesn’t see people with severe cognitive impairments as people. People believe he is advocating for genocide; however, he doesn’t see it that way. He views disabled people as worse off and believes they will have a less happy life. Singer is a man who wants disabled people dead.

Quarantine

The COVID-19 pandemic had numerous effects on people with disabilities. Quarantine often restricted people’s access to healthcare. For disabled individuals this included specialized care. The isolation that everyone felt during the pandemic was even more severe for disabled individuals who relied on community programs and support groups. Covid heightened the isolation for an already marginalized group. The stress and disruption with quarantine often intensified pre-existing health conditions.

“Spoonie”

The Spoon Theory is a great way to show the amount of energy used by people dealing with chronic illness. A search on any social media site will pull up thousands of posts with people identifying as a “Spoonie.” Spoons are an abstract unit of energy that represent a person’s ability to complete tasks. A Spoonie has less spoons to spend than goals that need to be met for the day. Taking a shower, brushing your teeth, and getting dressed might take one spoon each. Someone might only have 15 spoons for one day. Going to work, taking your kids to school, making dinner… now they’re out of spoons. They have no more energy to give, an everyday reality for those who live with a chronic illness.

Timmy!

South Park is often very crude and far from politically correct. While you may think that South Park would have a disrespectful portrayal of people with disabilities, the show offers a nuanced portrayal and social commentary of how people with disabilities are viewed by society. Timmy is a disabled fourth grader and reoccurring character in the show. The point of Timmy’s character is to mock how uncomfortable his existence makes adults. Timmy is a loved character by fans and won a BBC poll for being the most loved disabled character on television. The children of South Park never bullied Timmy because of his disability. Timmy is still “one of the boys” who gets involved in cursing and other shenanigans with the group. Timmy is portrayed as a character who just happens to also have a disability.

Unspeakable Conversations

Unspeakable Conversations is an essay that recalls a debate between the author Harriet McBryde Johnson (a disability activist and lawyer) and Peter Singer who needs no introduction. Johnson, who had been disabled since birth with a neuromuscular disease, challenged Singer’s view of killing severely disabled infants or terminating pregnancies when the fetus will have a disability. Johnson passionately debated Singer’s views and shed light on the value of the complexities of living with a disability and what constitutes a valuable life. Johnson was a resilient advocate for disability rights and will always be a role model for many disabled people.

Walking Over Water

A couple months after being discharged I returned to my city’s walking bridge. The last time I attempted to walk on the bridge I was on crutches and in excruciating pain. I remember having to take a lot of breaks which led to me reading the plaques detailing the bridges’ history. However, this time I walked without the assistance of crutches and only needed to sit down occasionally. At the end of the bridge, I headed over to a dock to look at the water. It was slightly murky, but I could still see a different reflection.

           
You

It is important to challenge ableism and advocate for disability justice. You can amplify disabled voices, and with social media this is an easy task. You can read and learn more about disability history and culture; it is important for you to recognize the intersectionality of individuals. You can advocate for policy change and challenge ableism you see in your daily lives. The Disability Justice Movement starts with you.                                                          

Bibliography

“Funkhouser Building—a Student’s View of Campus Then & Now—UK Special Collections Research Center.” Ukyscrcexhibits.omeka.net. Accessed 31 Mar. 2024.

Laurence, Jeremy. “The Man Who Would Kill Disabled Babies.” The Independent. 13 May 1998.

Moyer, Melinda Wenner. “Why Nearly 80 Percent of Autoimmune Sufferers Are Female.” Scientific American, 1 Sept. 2021.

Rao, Karishma. “What Happened to Joji? Health Problems Explored as Fans Slam Coachella 2022 over Livestream Controversy.” SK Pop, 19 Apr. 2022.

Shannon, Jeff. “Timmy of ‘South Park’ Challenges Viewers’ Attitudes about People with Disabilities.” The Seattle Times, 28 Nov. 2005.