By: Shelby Smith
This article is part of the Summer 2021 Magazine Issue Series. Read the full issue here.
Your friends are planning a night out at the movies. You have to make sure you eat something before you go so you don’t get too hungry before the popcorn. Better switch those contacts for your blue-light lenses. Pack a plastic bag in case your friend’s driving makes you sick on the way. Pack your nausea medication, too. Get there early so you can get seats in the back…
Seeing a movie is a production all its own for someone with chronic migraines that can be triggered at the drop of a whole slew of hats. When plans are made, you are left to wonder and worry if you’ll be able to fit into them. Or if you’ll be the one who ruins the fun. Or maybe it’s best not to go at all and avoid that possibility. But what if they think you’re making excuses…
This is the daily mental gymnastics of invisibly disabled folks.
Generally, when one thinks of disability, they don’t consider ones they cannot see but rather conjure images of wheelchairs and handicapped parking spots. This association of disability with something that can be seen by others is wildly pervasive in American culture. According to Forbes, of the 42 million disabled Americans, a whopping 96% of them are unseen, lurking beneath the surface of a seemingly-healthy body.
The World Health Organization defines disability as reference to “the interaction between individuals with a health condition (e.g. cerebral palsy, down syndrome and depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings and limited social supports).”
No truly good or comprehensive definition of disability exists, as any one fails to approach the multiplicity of what disability means in practice. Disability activists now advocate for examining multiple models of disability, particularly medical and social, which are vital in “conceptualizing and providing a framework for understanding society’s perceptions and actions toward individual differences in ability,” according to the University of Oregon’s Accessible Education Center.
The medical model views disability as something which is located in the body, by a doctor, and then treated. As if it is something to be “fixed.” The medical model has been historically relied upon to alienate and dehumanize disabled people. The social model of disability, however, asserts that disability is created by a society not adequately built to suit the needs of multiple bodies and minds.
“As a Black woman, I’m used to society not being built for me. When I got diagnosed with my chronic illnesses, it became even more obvious,” said Charlotte Bachelor, a professional and public writing major and digital humanities minor at Michigan State University. She lives with bipolar I, chronic fatigue syndrome and postural tachycardia syndrome.
Bipolar disorder is a lifelong mental health condition that “causes extreme mood swings that include emotional highs (mania or hypomania) and lows (depression),” according to Mayo Clinic.
“My freshman year, I checked myself into a mental institute and did an intensive outpatient program for weeks, and we found out I had bipolar I. So, I had to completely step away from MSU because I was severely depressed,” said Bachelor. “My mom at first, and rightfully so, did not trust me to be alone without attempting to kill or harm myself.”
“That was a lot, but once I got on the right meds with the right therapist, things started to get better for me.”
According to the Mayo Clinic, chronic fatigue syndrome is “a complicated disorder characterized by extreme fatigue that lasts for at least six months and can’t be fully explained by an underlying medical condition.” Physical and mental exertion exacerbate the fatigue, which is not improved by sleep or rest. Mayo Clinic asserts that postural tachycardia syndrome is often a symptom for those with CFS. According to pediatric psychologist Dr. Sherilyn W. Driscoll, “patients diagnosed with POTS may experience decreased school attendance, withdrawal from extracurricular activities, decreased academic performance” and other symptoms such as depression and anxiety.
Bachelor has faced such hurdles, particularly for a period in the early stages of her diagnosis.
“We were going from doctor to doctor for tests and bloodwork to rule out what wasn’t wrong. My family doctor pulled my mom aside to tell her he didn’t think I should go back to school because of the chance of me having an episode and collapsing,” said Bachelor.
“What are the chances I’m walking home from class one night, or I’m on the bus, or I’m in my dorm alone and fall and there’s no one there to help me? So, we decided I wouldn’t go back to school until we figured out what had happened. That was really heartbreaking for me because school is my pride and joy.”
The CDC synthesizes the International Classification of Functioning, Disability and Health’s assertion that disability has three dimensions:
- Impairment to some bodily function or structure, or mental functioning. For example, loss of hearing, memory loss or loss of a limb.
- Limited ability to complete some activities, including difficulty reading, walking, focusing and more.
- Restricted participation in everyday endeavors like taking care of self and home, working and enjoying time with friends.
Bachelor tackles these dimensions on a daily basis. “You constantly have to be thinking one step ahead of yourself. Like what if I get there, and I have to go up a bunch of stairs, then I’m gonna be tired or be sick for ten minutes? It’s a struggle.”
Bachelor’s conditions are largely invisible in that one isn’t likely to know she’s disabled unless she shares the information. There is a poignant vulnerability involved with disclosing such information given the rich history of discrimination, hate and stigma surrounding disability; this goes tenfold for Black women.
“When considering disabilities, we also have to think of other contributing factors and intersectionality, especially race and gender, because those also play a role in how disabled people are treated.”
“It’s a matter of, do I say I have a disability? This is dangerous because of the way the public doesn’t understand disability as a spectrum that affects more people than those with mobility concerns, and my disability is related to my mental health. I graduate next December and am very aware that there is no RCPD in the real world when you go to work for someone,” said Bachelor, referring to MSU’s Resource Center for Persons with Disabilities. The RCPD provides accommodations and services to disabled students and employees.
The RCPD works with students, faculty and staff to maximize “ability and opportunity” at MSU. According to their website, the RCPD defines disability as “a physical or mental impairment that substantially limits one or more major life activities, such as sitting, sleeping, or concentrating. Disabilities may be acquired at any time and are an aspect of life and diversity.”
“I have had RCPD accommodations since my freshman year at MSU, and honestly, it’s made my college experience so much better. My disability coordinator is very understanding of the changing status of my condition and all my professors have been understanding of my accommodations,” said Bachelor.
To seek accommodations through the RCPD, visit www.rcpd.msu.edu/get-started. The first step is to “formally identify as a student or employee with a physical, sensory, cognitive or psychological disability” via their online portal. Then, request an appointment with an RCPD Ability Access Specialist. Notably, these appointments will not be made until the RCPD receives “sufficient documentation” for the disability.
In order to seek help from a resource with the word disability in the name, one must first reconcile with that identity. Since disability is steeped in stigma, it can be hard for individuals to make that identification. Similarly, there is no clear line of being “disabled enough” to need support, so some people who could benefit from such services choose not to use them. It’s also a deeply personal choice.
Mitch Carr is a first-year graduate student at MSU. In high school, due to a traumatic sports injury, he had a full knee replacement and now lives with chronic pain.
“I never sought accommodation from the university. It’s just my knee, so it doesn’t really affect my mental capacity, even though I guess it could. It’s just a pain that I’m learning to live with. I feel like [by getting RCPD accommodations] I would be taking away resources for someone who needs it more.”
Yet another hurdle to this situation is the nebulous ways in which disability is defined or accepted by the powers that be. Also, resources such as the RCPD can require diagnosis, or “sufficient documentation,” which can be an incredibly time consuming and financially draining privilege not accessible to all disabled folks.
Take Irritable Bowel Syndrome, for instance. IBS as a long-term, chronic condition that “affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, and diarrhea or constipation or both,” according to Mayo Clinic.
Jenna Merony is a MSU senior majoring in professional and public writing and English with a concentration in creative writing. She has IBS, and she also doesn’t get accomodations from the RCPD, though her experience is likely to qualify for accommodations as a chronic health disability.
“I never felt there was much that they could do to help me,” said Merony.
It’s vital to note the aforementioned powers that be, or the American government, gives people with IBS a notoriously hard time getting social security benefits for the condition alone. It’s hailed as being extremely difficult, but not impossible, to get such benefits even though IBS is frequently associated with poor quality of life, as “people with IBS miss three times as many days from work as do those without bowel symptoms,” according to Mayo Clinic.
This is particularly abhorrent considering the general state of adequate, paid sick leave in American workplaces. If people with IBS can’t get disability benefits from the government, they must work to survive. According to the U.S. Bureau of Labor, the average American working in the private sector gets a measly seven sick days a year. To earn one additional sick day a year, it will likely take 20 years of work at the same company, another American average.
Furthermore, living with IBS commonly leads to depression or anxiety, which can in turn worsen IBS symptoms. It is not at all uncommon for disability to scaffold like this. As a result of a world entirely ill-equipped to meet their basic needs, disabled folks are more likely to report poorer health overall as well as less access to sufficient care , according to the CDC. So, it is no wonder at all that disability often multiplies for individuals. It is in no way static or determined, and it bleeds from one area to the next if not adequately addressed. And that is not an easy thing to do.
The barriers here are infinite, from disbelieving doctors, an utter lack of empathy and a sometimes entirely untenable path to diagnosis, the very thing necessary for most avenues of help. The truth of it is that accessibility is inaccessible.
It absolutely cannot be neglected that an ever-present barrier not only to diagnosis but to adequate care is prejudice. And, when it comes to healthcare, implicit bias kills, whether it be ableism, racism, fatphobia, sexism, xenophobia… the list goes on. A healthcare provider with implicit bias may attribute qualities to members of a given group unconsciously and as a result of stereotyping. These biases are dangerous and actively keep those who live in marginalized bodies from diagnosis and adequate care.
It’s no wonder disabled folks feel less than encouraged to seek help. Asking for help puts one in a vulnerable position, and all too often that can make for a shameful experience. The association of shame with chronic conditions is pervasive. According to Psychology Today, “shame comes from the internalization of this cultural belief that we are somehow at fault for getting ill and for continuing to be ill. Looking and acting differently than ‘the norm’ can also be a shame trigger.”
Living with IBS creates a lose-lose situation when it comes to norms for Merony as she can either be outside the “norm” by experiencing IBS symptoms and eating what others do or by being on an extra-restricted diet.
“I always have to choose the restaurant to make sure I can eat something, or I have to make my own meal and bring it to a place they choose. People look at me funny sometimes when I pull out food at a restaurant, but they don’t know everything on the menu will cause me to blow up like a balloon and be uncomfortable for the next day or two,” said Merony. “Having IBS makes me worried about dating or making new friends because I’ll have to explain why I choose to eat a salad or bring my own meal to their house.”
In her article “‘We Don’t Have a Box’: Understanding Hidden Disability Identity Utilizing Narrative Research Methodology,” Aimee Burke Valeras defines hidden disability as “one unapparent to outside observers.” Valeras discusses how such hidden disabilities “def[y] the outward social construction of disability.” The article notes invisibly disabled folks are granted certain anonymity in exchange for a separate set of challenges, “including learning strategic self-disclosure and impression management; when to disclose and make disability visible and when to ‘pass’ and give society the impression of ‘ablebodiedness.’”
“The choice, to be or not to be disabled, has important implications for the way we conceptualize disability, and the concept of identity as a whole.”
Of course, what Valeras understands is that this choice is mere illusion so far as disability. One choice lies in how you present yourself to others, and this is no small thing. More often than not it comes with a great deal of anxiety and maybe even imposter syndrome, which is exceedingly common among the invisibly disabled.
The value placed on the “norm” is astronomical in the U.S. and damages not only the disability community but so many other marginalized groups including people of color, the queer community and more—pretty much anyone who is not a white, cisgender, heterosexual, Christian man. Each of those communities, too, have gatekeeping of their own, whether it be external or internal. Do I like boys too much to be bisexual? Am I really disabled if I only have a debilitating migraine half the days out of the month? Am I too good in school to really have ADHD that bad? The internal monologue of one who fears claiming any suffering will offend those who have suffered more, and ostracization from the community will only be further cemented.
It isn’t just others who assert that disability is the fault of the individual. Sometimes, this can be an internalized thought process for illnesses and chronic pain that can be triggered or caused by some action.
“I don’t see it as a disability since I can do so much with my body physically; however, when those stomach problems do come on, I feel angry and alone. There isn’t really a place or space for people with IBS to come together and talk or help each other out,” said Merony. “When thinking about the disability community, I don’t label myself as within it.”
The medical model of disability asserts, to the detriment of diabled people, that “the remedy for disability-related problems is cure or normalization of the individual,” according to the University of Oregon, while the social model considered the remedy to be “a change in the interaction between the individual and society.” In the case of IBS, such changes could include more conscious menus and food offerings in public spots.
“It is a choice on my end to feel the pain or be smart about what I eat. It isn’t the most exciting or easiest life to live, but I do what I can,” said Merony.
In this struggle with guilt and shame about her condition, Merony is far from alone.
“I never thought of myself as disabled before this winter. The doctor always warned me I would have really bad arthritis and couldn’t do certain things because of my injury,” said Carr. “I went skiing and had a really intense fall, and now I have really severe chronic pain because I ignored my doctor when I knew I shouldn’t have because I thought I had the ability to.”
“Since then, I feel like I’m still trying to navigate if this is really a disability. It wasn’t really until that fall and then experiencing pain every day while walking that I acknowledged my struggles as disabling,” said Carr. “Even now, I wrote a positionality paper for a class and I wrote abled-bodied because that’s what I’m used to. And I still consider myself mostly-abled, but my experiences this winter are changing my perspective on living with my artificial knee.”
Valeras explores the weight of identifying as disabled since the word is usually either embraced or repelled “as a self-characteristic.” For invisibly disabled people, they must decide each day, with each interaction, which identity to exhibit. They are in a constant negotiation of “when, where, why, and how to disclose and adopt the disability identity” or to “pass” as able-bodied. No matter the choice, “these decisions have reverberating implications for one’s whole self-concept and social relationships.”
This feeling of disbelonging in the disability community only piles onto the isolation inherently associated with chronic pain. According to the Invisible Disabilities Association, “a huge part of illness is isolation. Oftentimes the overwhelming nature of chronic illness and pain drives even friends and family members away.” As such, it can be difficult not to feel the need to do more than is good in order to avoid being cast off by loved ones for lack of involvement. It can be a daunting challenge to navigate personal well-being alongside social standing.
“This experience was very frightening and isolating. I hated not knowing what was really wrong with me and it caused me to get anxiety towards food and eating because I didn’t want to hurt,” said Merony. “It was isolating. I thought I was alone in all of this. Especially because I have a twin sister who didn’t have any of these problems, which made me feel even more like a freak at the time. I feared that I would never be normal again or feel like my old confident self again.”
Carr experiences similar isolation when his knee keeps him from joining in like he wants to.
“I have to remove myself from certain things. I can’t do the seasonal outdoor things all my friends like to do. So I have had to just accept my role as a bystander, and like, the comic relief friend who just hangs out instead of being engaged in the activity with everyone,” said Carr. An added layer to Carr’s dynamic is that he went from having visible indications of his pain, like crutches following his surgery, to not having a visible indication but just as much pain.
“I feel like my friends try to understand and be empathetic, but I also feel like they look at me and don’t understand why I can’t join in or that I’m [not] making it up. They’re great friends, though, and their actions are different from how I internalize them because it’s a shameful experience.”
There also exists the ever-present threat of not being believed. Talk about disheartening.
“Some people say it’s all in my head, which is insulting because they don’t see how big I get when I bloat, or understand how uncomfortable it is, so they don’t have the right to say that,” said Merony.
Despite the alienation forced on disabled communities globally, WHO regards disability as “part of being human,” for “almost everyone will temporarily or permanently experience disability at some point in their life. Over one billion people–about 15% of the global population–live with some form of disability and this number is increasing.”
This is especially sharp in the age of COVID-19, which is leaving an alarming number of people with significant, long-term health conditions. Disability becomes more pervasive by the day as long-term complications from COVID-19 have been noted to affect the cardiovascular, respiratory, renal, dermatologic, neurological and psychiatric systems, according to the CDC.
Valeras’s article details the accounts of many invisibly disabled individuals, much like Bachelor, Carr and Merony, who embody a multitude of flexible identities. Valeras posits the term “bi-ability” to describe how those with hidden disabilities “travers[e] the borderlands between binary categories of identity.”
Invisibly disabled folks, due to the nature of the ill-equipped world, learn to become chameleons. According to Valeras, they live “on the edge of social, cultural, and political lines and are adapting to the situation in which they find themselves at any given moment learning to emphasize or deemphasize various aspects of identity, depending on the pressures of the social context.”
These tightropes are anything but simple to navigate, made ever more complicated by the games one’s own mind can play about such things. Carr lives in this struggle but is not without optimism.
“Shame is an intense emotion that makes you believe you are flawed and therefore invalid. Through vulnerabilities we can build courage and limit the validations of others. Courage begins with validating ourselves.”
And this is the seemingly impossible task facing invisibly disabled folks. Our world can all-too-often be shrouded in struggle, stigma and shame when we are made to feel as if our body or our brain is inadequate—or perhaps both. We face a world jumping at every opportunity to invalidate us and our experiences. And this world, we know, is slow to change. Until it does, on we trudge.
Shelby Smith is an invisibly disabled writer. While battling chronic migraines and inattentive ADHD, she experiences senses of isolation, self-blame for her conditions, and a strong feeling of not belonging within, and sometimes without, the disability community. She is a senior double majoring in English and professional and public writing with a concentration in creative writing. Shelby plans to spend her days post-graduation enthusing about grammar to her high school English class, reading (and possibly writing) wonderfully terrible romance novels, and hand embroidering.