Johnny Pelham, a British comedian who, in his own words, has “a bit of a messed-up body. Nothing too bad. Cleft lip, webbed toes, [and] more nipples than [are] ideal,” hated Camp Courage. It’s not that its ideals—a camp for disabled people—were bad, but that its execution held the disabled campers to an insultingly low standard. On the last night of camp, his counselor told him and his fellow campers “You know what I think is the bravest thing you can do? It’s to keep being the wonderful people that you are.” Johnny unsurprisingly disagrees, saying “sometimes the bravest thing that you can do is to tell your camp organizer to piss off.”
I know Johnny’s frustration, but I can also avoid it. As my disability—epilepsy—is hidden, I receive society’s messages to the disabled, am held back by society’s ablism, and wrestle with tasks others take for granted. Yet no one volunteers condescending messages about bravery and my condition is not the face of disability. On the one hand, this has advantages. I don’t worry about stereotypes influencing people’s interactions with me or being discriminated against because of how I look or sound. Most people I encounter outside my home don’t know I have a disability even after lengthy conversations. Unless I have a seizure, I get to choose how and when people learn of my condition. This has its drawbacks. A more subtle form of discrimination operates on me which perhaps is not as harsh but leads to both disenfranchisement and feelings of resentment. The invisibility of my disability leads to a barrage of inquisitions, check-ins, and evaluations designed to confirm the specific nature of my disability, not just for my health but for jobs, relationships, and other social roles. I receive two messages: one telling me, like Johnny, that I am brave for existing, the other questioning whether I deserve disability accommodations. This contradiction of being held to both a high and low bar at the same time I call the Bravery Paradox.
Those who experience the Bravery Paradox encounter messages of hope and courage when their disability is most apparent, but scrutiny when their disability is not. They are lauded for their strength when they deal with difficult challenges, yet questioned or ignored when certain accommodations for their disability are needed. This is not to say that those with hidden disabilities are not given accommodations, but rather that their full needs are not addressed as only the primary and most visible symptoms of their condition are treated.
My girlfriend Kortnee and her daughter (who I am naming Sarah for her privacy) also have hidden disabilities. Kortnee wrestles with attention deficit hyperactivity disorder (ADHD) while Sarah has a form of autism that incorporates speech-impairment and an intellectual disability. Neither one, if seen in public, is immediately identifiable as disabled, but they both experience the Bravery Paradox. This article will explore the Bravery Paradox using experiences from each of our lives to illustrate how it appears from the first-person perspective. As Sarah is unable to share her experiences in her own words, the first-hand account of autism will focus on Kortnee’s experiences dealing with society’s attitudes towards Sarah.
Living with Hidden Disabilities
As epilepsy, ADHD, and autism are diverse and not always well-understood by society, I will begin with initial descriptions of them. Epilepsy is a neurological disorder caused by the firing of brain neurons outside one’s control. When that happens one has a seizure, which can manifest itself in many ways. Some epileptics stare into space, some have spasms or jerking motions, some lose consciousness, some have unusual feelings, and more. There is a similar diversity in medicine’s ability to control the disorder, as some epileptics won’t ever have a seizure if they take their medication, while others have them regularly, medication or not. More extreme treatments for epilepsy include removing the part of one’s brain from which seizures originate or brain implants. The side effects of medications include drowsiness, a lack of energy, agitation, headaches, shaking, and hair loss or unwanted hair growth.
ADHD is a common neurodevelopmental disorder that makes it difficult to focus on one task, control impulses, or stay idle. The brain of a person with ADHD experiences “executive dysfunction,” or trouble controlling thoughts, emotions, and behavior. ADHD presents itself in several ways, but common symptoms are difficulty starting or finishing tasks, finding it hard to pay attention to details, fidgeting, and making spontaneous actions or statements. The causes are unknown, but are likely influenced by genetics and the anatomy of one’s brain. Other causes being explored include premature birth, environmental factors during one’s childhood, brain injury, and drug use. Treatment usually involves a combination of medication and behavioral therapy.
Autism is probably the most variable condition of the three as it manifests itself in many ways. It is caused by the brain as well, though the specifics are still under investigation. Autistic individuals process experiences differently from non-autistic people, the outcome being that they communicate with others and interact with their environment differently. Symptoms of autism are highly variable and include difficulty speaking, lack of eye contact, inappropriate facial expressions or gestures, difficulty recognizing emotions in others, difficulty expressing emotions, feeling overwhelmed in social situations, repetitive body movements, and resistance to change in daily habits. Because of the diversity of ways autism presents itself, each individual’s treatment plan is different. Generally, autistic people require some combination of specialized parenting, therapy, and schooling. Depending on one’s condition, some autistic people may live an autonomous life while others may require continual supervision. In some cases, autism can be considered a visible disability since the symptoms are so manifest, but in other cases it is easily hidden.
A description of these conditions provides food for thought but little understanding of what it’s like to live with the conditions. As the diagnosis of any of these conditions is a life-transforming event, let’s start with how that happened for Kortnee, Sarah, and me.
I was first diagnosed with epilepsy at age five. At the time I was unaware of epilepsy and certainly didn’t recognize it as a serious problem. My first seizure happened while I was alone, and caused my head to turn to the side uncontrollably for five to ten seconds. When I regained control over my head I went back to what I was doing, assuming that what happened was something trivial about growing up that I hadn’t learned yet. My first seizure in front of my family changed that. I remember that moment for the speed with which the mood changed from happiness to anxiety, as I was suddenly being questioned about how many times I had had seizures before, what had happened, when it happened, etc. The looks on my parents’ faces made clear this was both serious and abnormal. Shortly thereafter I began an ongoing engagement with neurologists, whom I have seen at least once a year and as often as once a month.
Kortnee’s and Sarah’s experiences differ in a few ways. Both ADHD and autism are common in their family, while I’m the only person in mine with epilepsy. Moreover, as neither people with ADHD nor autistic people (note: many in the autistic community prefer the term “autistic people” to “people with autism” because autism is central to their identity) exhibit such shocking behavior as seizures, it took a while for both conditions to be diagnosed. Kortnee diagnosed herself initially, as she knew that she was often clumsy, forgetful, and disorganized. She felt strongly that her mental health was off in some way, but wasn’t sure exactly how until the pandemic, when she started using TikTok to pass the time. She would search for videos of clumsy or forgetful women she could relate to, and soon afterward TikTok’s algorithm started recommending videos about ADHD. While initially skeptical, when she watched videos of people with ADHD describing their symptoms, she saw that she checked many of the same boxes. This led her to a doctor who brushed off her concerns, saying that if she had ADHD she would have been diagnosed by now. Kortnee was disappointed but initially accepted the doctor’s conclusion. It was only after she saw therapists on TikTok saying that the anxiety produced by an abusive household could mask symptoms of ADHD that she reassessed this (Kortnee’s stepfather was abusive). Kortnee visited several doctors over the course of three years with no luck. Exhausted and feeling distrusted by the medical establishment, she broke down in front of the most recent doctor (who, Kortnee notes, was the only female she saw). That doctor sent her for testing, and shortly afterward she received an ADHD diagnosis.
Sarah, being unable to describe her challenges, relied on Kortnee’s expertise in Child Development, as Kortnee is an early childhood teacher with expertise in special education. Until one year of age, Sarah hit her developmental milestones. Sarah even skipped her first word, saying her first sentence—“I did it!”—instead. At 13 months there was a regression. Sarah stopped making eye contact, cried often, talked less, and played in a very regimented way. At the time, Kortnee lacked health insurance and couldn’t bring Sarah to a doctor. She instead told her suspicions to a nurse practitioner at a clinic run by the Department of Health and Human Services. The nurse practitioner was categorical that Sarah’s problems could only be that she was teething, despite the nurse’s lack of training in pediatrics. When Kortnee got another job and went back on health care six months later, she brought her concerns to a pediatric doctor, who immediately referred Sarah for testing. It took several months but Sarah got her diagnosis, and after Kortnee fought the insurance company Sarah got behavioral therapy too.
You can start to see the outlines of the Bravery Paradox emerging, as each of us has been subjected to high levels of scrutiny by experts in order to determine exactly what is occurring inside our brains. While no one doubted my epilepsy diagnosis, Kortnee and Sarah encountered skepticism multiple times. While we’re glad to have our diagnoses, it has changed our lives in three significant ways.
First, ADHD, epilepsy, and autism have isolated us. My epilepsy medication is absorbed by the liver, a process that is interrupted if the liver is metabolizing alcohol. To prevent seizures, I cannot get drunk. If I go to a bar I may have one or two drinks, but cut myself off after that and make sure that I’m not even tipsy when I drive home. Unless someone I know wants to go to a bar I don’t go to one, as I can’t easily connect with those who are intoxicated. My inability to engage in an activity heavily intertwined with social life influences my identity and relationships. This has made it difficult at times to meet people since bars are one of the main places that happens. I enjoy nights out with friends as I like their company, but I know that as the night goes on I’ll be less able to connect with them. At parties, I will participate in non-drinking activities as much as I can, but am inevitably sidelined given how many of them incorporate alcohol. In college, this meant watching friends play beer pong or other drinking games, and only joining when I could find someone willing to drink for me. When I went to KTV (a popular karaoke bar in China), this meant waiting while my friends picked out what drinks to bring up to the room; being unable to join discussions about states of drunkenness, the quality of the alcohol, and how their drunken state was making them feel; and being increasingly unable to follow along with the night’s events as they became motivated more by a lack of inhibitions and less by reason.
Kortnee experiences a similar sense of isolation. As she has trouble starting and completing tasks, she constantly feels overwhelmed by work. Teaching can be a high-stress job, and Kortnee has had a significant workload at several of her employers. While Kortnee doesn’t want to push the burden of her ADHD onto others, she does wish that others would give her the consideration she needs. This has not been forthcoming by many of her colleagues, who often don’t understand her condition. It is common for people to provide advice about how to stay organized, as though the mental chaos she experiences would be solved by simply having a calendar. This is not to say that organizational techniques don’t help. Kortnee keeps a schedule in her kitchen of when she needs to complete certain tasks, and lists of things she needs to buy. Yet the challenge of dealing with ADHD requires more than the organizational tools she has. This lack of understanding leads to misunderstandings and isolation, as people attribute her behavior to laziness or unprofessionalism. The resulting resentment is hard to combat as long as ADHD is poorly understood because Kortnee’s explanations can come off as excuses for poor conduct. Similarly, while Kortnee doesn’t struggle with hyperactivity in the form of constant movement, those who do may be seen as rude instead of disabled.
While Sarah does experience isolation, this is often at her choosing. She often feels more comfortable playing alone as she has difficulty connecting with people her age. She can enjoy being with others, but will have a tantrum if she is forced to be when she’s not in the mood. The isolating effects of autism are experienced more by Kortnee, who has lost friends that don’t understand what Sarah’s condition requires. Kortnee cannot bring Sarah to a get-together of moms with similarly aged children. Sarah connects more with adults and toddlers, and tends to have a better time when she’s the only child present. Neither can Kortnee make plans at a moment’s notice, since the average babysitter is not trained to deal with autistic children like Sarah. Kortnee can count on one hand the number of people she trusts to watch Sarah. Plans usually require several days’ notice, and Kortnee prefers a week to be safe. It’s also difficult for Kortnee to make new friends while with Sarah, since Sarah doesn’t follow social norms and makes it clear when she’s unhappy. Unless the person Kortnee’s talking to can identify autism in Sarah’s behavior, it can be off-putting. As Kortnee is the only parent caring for Sarah most of the week, this leaves little time for social events.
Second, epilepsy, ADHD, and autism also make performing common parts of jobs difficult. Epilepsy has a complex relationship to sleep, and excessive sleepiness is a common complaint reported by epileptics. I often need naps of 1-2 hours to get through the day. Luckily, I don’t work at a 9-5 job that tracks productivity by how much time I am active at work, as I would get poor scores. Instead, I am assessed by whether I complete my assignments on time, and can work extra hours at home to make up for any lack of efficiency at the office. Nevertheless, in philosophy sleepiness can be a serious detriment. Academics are judged by the number of publications they put out, the amount of extra service they do, and the classes they teach, among other things. I do my day-to-day job well, but I also desire recognition for my ongoing research. If putting in long hours is either a necessary or highly advantageous condition for recognition, I am unlikely to receive it. This leads to a related frustration inasmuch as academic opportunities depend on one’s academic record, and the more opportunities one has had in the past the more one is likely to receive in the future.
While Kortnee doesn’t need naps, she does need discipline to complete her assignments. She can do this if she’s given accommodations, but thus far none of her institutions have provided her with any legal accommodations (since ADHD is not always recognized as a distinct disability). One example is how she organizes her workspace. To others, her desk seems unorganized, as though things were thrown into random piles. But if Kortnee doesn’t see things she needs to do regularly, her difficulty with attention leads her to forget them. Filing cabinets make her less productive. People with ADHD also perceive time differently, which in Kortnee’s case means that fun tasks seem to be over quickly while chores seem to take forever. One reason she isn’t as effective in completing tasks is because she is not as good as others in estimating how long they will take. There are small things that those around her could do to improve her efficiency. One example is for people to indicate expectations of her. When she knows that people around her have expectations, she’s more likely to meet those expectations.
Sarah’s intellectual disability coupled with the different ways she processes sensory information makes it unlikely that she will ever hold more than a simple job, and it is likely she will be unable to live an autonomous life. While the repetitive motions required for some jobs align with Sarah’s preferred form of play, she currently has difficulty controlling her impulses and desires. Depending on how much control she is ultimately able to exercise, performing repetitive actions on someone else’s schedule may be impossible. She will likely always be incapable of common activities like raising children and handling finances. Kortnee expects that, as an adult, Sarah will be living with her or in a group home that caters to the intellectually disabled. Currently, Sarah’s disability means she needs to be guided through many social encounters. She’s learned to ask for things when she wants them, but needs to be prompted to say “Please” or “Thank you.” When Sarah first encounters other people, Kortnee often gives them advice. For example, if Sarah wants to interact with someone her age on the playground, Kortnee encourages the other child to play with Sarah as if they were playing with a 3-year-old.
Third, epilepsy, autism, and ADHD add small yet vital tasks to one’s everyday life. If I am not attentive about taking my medication I might have a seizure and lose my license until I’ve gone for a year without an episode. While I currently am legally allowed to drive, I’ve been prevented from doing so in the past. Even after the period when I was unable to drive, my insurance would only cover me if the premiums were increased substantially, which at the time I could not afford. To avoid a repeat of this situation I need to monitor my behavior, making sure I am taking my medication and not doing anything that would endanger the freedoms I currently enjoy.
Kortnee’s ADHD requires her to arrange her life so that she will regularly be confronted with the tasks she needs to complete. Barring that, the flood of thoughts she deals with and the effects of her “time-blindness” makes organization a monumental task. Kortnee expends more energy than most people trying to organize her life. The medication helps, but only lessens the problem; it doesn’t eliminate it. If Kortnee doesn’t plan ahead to accommodate her ADHD (e.g., by setting lots of reminders, arranging her workspace and home appropriately), she can easily lose track of something important.
Sarah’s lifestyle adjustments are currently handled by Kortnee and the other guardians in Sarah’s life. However, as the above makes clear, there are significant adjustments Sarah’s caretakers must make to avoid difficult situations. For example, when leaving the house it is necessary to bring something to distract Sarah in case she gets upset; she must be constantly watched to keep her from impulsively doing something dangerous; and all activities must be vetted to be sure they are appropriate (e.g., Sarah will not sit still or stay quiet in a theatre).
Drawing out the Bravery Paradox
On the one hand, these three changes to our lives are expected. Being “disabled” means that certain activities will be difficult or impossible for us. However, the problem with the Bravery Paradox is not that our lives are different, but how the high scrutiny and low standards combine for the hidden disabled in ways that make life harder than necessary. To explore this, let’s look at the messages society sends to epileptics, autistics, and people with ADHD.
One of the most common messages we receive is to avoid fear. Introductions to the conditions emphasize that these conditions are more common than generally thought and that they can be controlled. Another is to have hope. Advocacy organizations share new research and ask for donations. Videos explain how people were able to live good lives with the conditions. A third message is the importance of proceeding scientifically. Doctors project images of calm and rationality, conveying information clearly and discussing treatment options. Despite this, the medical industry, government, and workplaces send messages of skepticism. People needing accommodations need to prove they deserve them. Disability benefits are only given out if one’s condition influences one’s ability to sustain oneself through work, not just because the condition makes work difficult. Demonstrating your need requires meeting specialists, filling out forms, and taking tests, and this is not always easy to do (especially if one must work during this process). As Kortnee’s and Sarah’s experiences show, when you lack visible symptoms (e.g., my seizures are evident), the skepticism can be significant. And even if one of the hidden disabled gets benefits, their insurance may not cover more experimental treatments.
This, then, is the nature of the bravery paradox, which promotes the low standard of courage for existing while requiring an exhausting number of steps to receive accommodations, if accommodations exist at all. A major part of this paradox is that accommodations tend to be given only to the visible or most debilitating parts of the disability, but not for the everyday enfeeblements that correlate with it. Information about these everyday enfeeblements is often not part of one’s orientation to their disability and must be sought out on one’s own. I discovered the connection between epilepsy medications and excessive sleepiness by doing internet searches on my own time. Prior to that, the only indication I had of this was the equivocal and vague “may cause drowsiness” stickers on some medications. Kortnee relies on social media posts narrating the everydayness of ADHD for advice. Sarah depends on the knowledgeability of those around her, which is hit or miss in public.
It is in these quotidian encounters that the barriers we encounter manifest themselves most clearly. Kortnee, Sarah, and I receive ample attention for the most incapacitating parts of our disabilities via medications and medical care. Similarly, we get the “low standard” messages when we share our disabilities with others (and we do appreciate them when heartfelt). But there are many aspects of our lives that cannot be fixed or managed by specialists and require those in civil society to make minor adjustments in addition to expressing sympathy. One reason Kortnee and I are at times reluctant to bring up our disabilities is because we know how those conversations proceed. Messages of care or questions about medical diagnostics will follow, then anecdotes about knowing others with disabilities. These often disrupt the conversation we were having and which we may prefer. What’s not forthcoming is institutional or social support for the everyday challenges we face. For me, this would involve adjustments for my sleepiness, perhaps by requiring less teaching or service so I can spend more time on research. For Kortnee, this would involve giving her time and space to organize her professional life. For all three of us, this would involve creating more inclusive activities and spaces. Yet bringing up these topics with our employers or social circles is fraught. I fear being called lazy and losing a spot in a highly competitive field. Kortnee worries about being called messy or retaliated against for not doing her part. We both worry about losing friends or harming professional relationships. (Sarah, to the extent that her feelings are clear, gets confused and disappointed by the behavior of people unfamiliar with autism.)
These criticisms aren’t categorical. Kortnee, Sarah, and I have all had colleagues and friends who were very supportive and who did much to accommodate our disabilities. Indeed, most accommodations I’ve received originated in one-on-one conversations with supervisors or friends. But there’s a limit to what can be accomplished in such settings. My supervisors don’t control my contractual teaching load, nor Kortnee’s workspace and schedule. These are decided by executives at our employers who are unfamiliar with our conditions, especially the everyday difficulties they create. While Sarah’s teachers are trained in special education, she can’t do many activities other children have access to because classes for kids with her condition don’t exist. Kortnee wants Sarah to try gymnastics as Sarah loves to move, jump, and stretch her body, but Kortnee doubts that a gymnastics teacher would have the necessary patience and experience to effectively teach Sarah. While Kortnee has found special-ed-friendly swim classes, they are too far away.
Similarly, it is reasonable to subject the hidden disabled to some level of scrutiny, since it is important for doctors to understand exactly what is going on. It is also reasonable for the government to ensure I’m not a threat while driving and for employers to ensure Kortnee can do her job. The concern here is about the scrutiny we undergo in our everyday lives which prevents us from receiving accommodations or living more fulfilling ones. It would help if the hidden disabled could have more autonomy over how they arrange their work and personal lives.
It is challenging to understand the diverse ways people think. Brain disorders aren’t generally noticeable unless they influence one’s behavior or speech, so it is common to assume that the people you encounter use familiar patterns of cognition. However, there are many neurological conditions which both influence thought and go unseen. These conditions lead to unique lifestyles which seem abnormal to those unfamiliar with the conditions causing them. If people and organizations in society would question their assumptions about how others think, and trust people who say they are neurodivergent, it might be easier to adapt public areas for people who feel isolated.
Conclusion
Some of the most frustrating experiences I’ve seen involving a hidden disability don’t come from me, Kortnee, or Sarah. They involve a family member who I am not naming out of respect for her privacy. Her hidden disability also isolates her, keeps her from doing common tasks, and adds tasks to her everyday life. The places she worked in were sympathetic to her condition but were unwilling to offer accommodations that would allow her to complete her work. Rather, she was required to complete her tasks in a manner detrimental to her health. When observing a lengthy demonstration that required people to be on their feet for a long period of time, she requested a stool to sit on. It was an innocuous request as a stool was readily available, but she was told that she could not use it because other students didn’t use stools. In another instance she was given permission to use a chair but only if she brought it herself, which would have required her to carry it—along with other materials she needed—from the parking lot into the building. In one extreme instance, she was accused of serious misconduct. Despite testimonial evidence from doctors, she was punished for doing what they recommended. More than anyone else I know she has received messages of courage coupled with high scrutiny for seeking accommodations (perhaps because her condition is the least familiar of those I’ve mentioned).
Because disability is a diverse category, this article cannot cover what it’s like to live with all hidden disabilities. Yet it is plausible to assume that the Bravery Paradox exists for them. Numerous websites discuss the barriers to employment experienced by people with schizophrenia. Newspaper articles contain anecdotes about the difficulty patients have getting diagnoses for conditions that many are unfamiliar with (e.g., lupus). The Hidden Disabilities Sunflower lanyard was created to raise awareness of the many disabilities that go unnoticed in the hopes of improving accommodations for them. A good starting point is to take a page from the #MeToo movement and trust those with documented disabilities when they ask for accommodations. Isn’t it better to give people the care they need instead of messages of sympathy coupled with ongoing scrutiny? The hidden disabled are largely people who want to participate in society; in general, we seek only minor accommodations and understanding. Finding spots for us is worth the price.
Nathan Eckstrand
Nathan Eckstrand is a Visiting Assistant Professor at Sam Houston State University. He was previously a Visiting Assistant Professor at Fort Hays State University and Marian University, and before that a Merton Teaching Fellow at Mercyhurst University in Erie, PA. Nathan previously served as editor-in-chief of the APA Blog, where he has worked since 2017. His dissertation, written under Fred Evans and defended in September 2014, is called “The Event of Revolution: Theorizing the Relationship between the State and Radical Change” and studies concepts of revolution from the Early Modern period to the present day. Nathan is also co-editor of Philosophy and the Return of Violence: Essays from this Widening Gyre, and has published articles on Deleuze, Foucault, Fanon, and Said. His most recent book, Liberating Revolution: Emancipating Radical Change from the State, is now available from SUNY Press.
