Embodied Communities Among Those With Hidden Disabilities
People with hidden disabilities always have stories to tell. They can usually decide whether they want their condition to inform their interactions with others. This leads to awkward, hilarious, and surprising moments. On my second date with my now wife, we were walking around a lake and chatting about nothing in particular. Without warning, she bolted for the lake then stopped at the shore. Caught off guard but not wanting to appear flustered, I asked what was going on. Her response, confusing at the time, was simply “Chaos brain. Wait.” She had seen a duck, which captured her attention. This was my introduction to her ADHD.
In addition to her ADHD, my wife Kortnee has bipolar disorder. My step-daughter Sarah (pseudonymized for her privacy) has autism. While I also have a disability—epilepsy—I will focus on their conditions for this piece. I discussed the generally unknown ways these disabilities affect our lives in a 2023 Blog article. For this piece, however, I explore on the lived experience of these conditions, and how, in phenomenological terms, the being-in-the world alongside people with disabilities develops a unique sense of community.
While it is common for disability theorists to encourage the disabled to tell their stories and ask society to both listen to their words and make accommodations, these steps are insufficient if they assume an objective reality that the disabled can’t experience as “normal” people do. No one knows for sure what it is like to be in the body of another, to experience what the world as they do. As Susan Bredleau and Talia Welsh say in the introduction to Normality, Abnormality, and Pathology in Merleau-Ponty, “So long as the lived experiences of those with illnesses and injuries are ignored or discounted, the illnesses and injuries will remain poorly understood.” Following Merleau-Ponty, they argue that treating the body as an object ignores how bodies are subjective since everyone experiences the world through them. One can learn about the causes of disability by treating the body as an object, but not how the disabled person’s body gives meaning to the world they experience. To understand the nature of disability, we must explore the being-in-the world of the disabled, or the way their bodies open them onto the world in unique ways.
Followers of this line of thinking often challenge the idea that people can be categorized as abled or disabled. Given the diversity of conditions recognized as disabilities and the social phenomena that produce them, researchers argue that the categories are not objective but objectivized. They appear objective because we’ve hidden their subjective origins. Objective accounts of disability should be problematized as they ignore the diversity of human experience and the subjective foundation of these accounts in one’s lived body. Though I agree with these critiques, I use the word ‘disability’ in this piece for the sake of clarity.
Many disabled people have written about their lived experience. In sharing the lived experience of my family, I focus not only on their specific conditions but the unique relationality that forms. While the Blog has discussed disability, it has never published an account of their lived experience. More significantly, I want to show how exploring the lived experiences of the disabled reveals a sense of community (understood by the Latin term communitas as a ‘sense of togetherness’) that is not well understood. While the Blog has many excellent pieces on love and community, none refer to their function in the context of disability. There is a similar paucity in academic literature, where the term “community,” when used in reference to the disabled, usually refers to the state or to the category of disability (i.e., things the community provides to the disabled or the disabled community).
Kortnee, Sarah, and I encounter the world in different ways. At home, our routines sometimes synchronize and sometimes clash. I tend to organize my schedule around things I need to do each day, waking with a plan of when and how to complete them. Without plans I feel aimless, as though my existence is not fixed anywhere in particular. Keeping to a schedule makes me feel my actions are purposeful and contribute to my larger goals. I prefer things to be organized, as it reinforces my feeling that events are proceeding properly. Kortnee’s ADHD makes it difficult to focus on tasks she finds uninteresting. Completing certain jobs (e.g., washing dishes or reading articles with familiar content) require high levels of focus that cannot be sustained for extended periods of time. For her, an environment with too much structure feels oppressive as her mind consistently deviates into other things that grab her attention. She uses the term “chaos brain” to describe how—without medication—many trains of thought occur at the same time, making focus on one thing difficult. She encounters our house in the same way, not as a structured and organized space filled with objects, but as a chaotic jumble. This is not a constraint; she finds it easier to encounter spaces like this. Sarah’s lived experience in our house is more difficult to discern given her limited linguistic ability, but she is drawn to familiar objects she associates with enjoyment, play, or love. She loves to jump on beds and play her tablet, and she is very affectionate with people she knows. Other objects puzzle her, as illustrated by her desire to manipulate objects which have an unclear purpose. She prefers routine, but she does not make advance plans. Her routines formed over time through her being-in-the world. Yet she is not only motivated by enjoyment. She has a sense of duty but must often be encouraged through verbal prompts.
When we venture outside, we face unique challenges. Sarah’s autism, while invisible at first glance, becomes apparent if one observes her for more than a few seconds. Kortnee and I have a set of looks, movements, and habits to keep Sarah calm. Sarah identifies certain noises much quicker than we do, and when those noises disturb her she has a hard time staying calm. She can have meltdowns because people are on those phones and temper tantrums when lines move slowly. Kortnee’s and my perceptions of objects that trigger Sarah gain more meaning when we’re with her. They transform from being innocuous parts of the perceptual background to important parts of our perceptual foreground. Similarly, Kortnee’s ADHD affects our decision-making in public. Kortnee can be an impulse buyer when it comes to her hobbies like gardening. On several occasions she’s asked me to tell her not to buy something. Even though she knows we shouldn’t spend money, hearing it from me helps her control her behavior (this is akin to the ADHD tactic of body-doubling, where the external presence of another improves executive brain function). In short, the outside world for Sarah is exciting yet dangerous. It contains places she enjoys, but her being-in-the-world can be disrupted by unexpected perceptions that trigger difficult emotions. Kortnee’s outside world is a place of many paths. When she is outdoors, the appearance of novelty can surprise her, making her lose focus. As someone who generally prefers predictability, I find myself trying to comprehend their perspectives to prepare as much as possible.
What is the sense of community that develops from this? Between Kortnee, myself, and Sarah, there’s a feeling of distinction since the means of communication we’ve developed are inimitable—sometimes invisible—outside of our familial context. Of course, all families have unique qualities and habits, but ours is in the minority since so much of it takes place using visual cues rather than language. At home, certain behaviors (hugs, cuddling, playtime) become more important than words to express our love for Sarah and Sarah’s love for us. How Sarah reacts to our parental authority gives us clues about her emotional state any given day, just as Sarah knows from our tone as much as our words whether she’s done something well or wrong. There is also a feeling of exclusivity among Kortnee and me because when we go out in public with Sarah, we’re the ones most qualified to interpret her needs for others. We encourage Sarah to speak to others but usually need to rephase or clarify her words. We become translators facilitating Sarah’s engagement with the world. Like many good parents, we make things easier for each other when we work as a team.
The lived experience we share with our community is polarized. When with Sarah, it is easy to feel the eyes of others on you. “Why is that child behaving that way? Haven’t the parents taught her proper manners?” you imagine others thinking. We always make sure Sarah is dressed nicely with her hair combed to minimize such worries. Encountering people who recognize Sarah is ‘special needs’ brings a wave of relief since we know we won’t be called to account for her behavior. We feel a connection with those who help Sarah navigate society. When Sarah recently saw a dentist, we knew in advance that she would need extra consideration (she dislikes the feeling of a toothbrush and can’t sit still for long). Our pediatric dentist specializes in helping children like Sarah, and at Sarah’s first appointment the assistant knew exactly how to set Sarah at ease. It is easy to build a sense of communitas with people who work together helping someone like Sarah. The opposite poll is the feeling of anger and defensiveness that arises when someone inconvenienced by Sarah is uninformed about conditions like hers. The last time Sarah flew on a plane, Kortnee arranged for someone from the TSA to guide her through security. When no one showed up Sarah had a meltdown. The person behind Kortnee in line declared that Sarah needed strict discipline, unaware that disciplining a child in a meltdown makes things worse. Thankfully, someone found a flight attendant to help Sarah calm down. Kortnee and I feel torn in such moments. We feel a need to speak for all autistics, imagining the injustices they’ve faced and what they would want to say. Yet caring for Sarah is our priority, since the sooner you intervene the more hope of soothing her. These encounters are toxic to communitas, as you leave with a distasteful residue of the encounter and the knowledge that your family cannot easily exist alongside such people.
There is no universal sense of camaraderie the disabled have with all society. The being-together of the disabled is distinct from that of all society and develops from their unique perspectives on the world. The emotional, physical, and/or cognitive labor that distinguishes their experiences from others binds them together with a shared sense of purpose. The experience of society can be heartwarming or frustrating. Collectively recognizing the subjectivity of disability develops strong bonds of community, while naivete about it makes a feeling of coexistence even more difficult.
What I’m reading: The most recent philosophy book I read is Decolonizing Freedom by Allison Weir. It explores how indigenous practices and ideologies provide a valuable alternative way of conceiving freedom. Rather than conceiving freedom as something which liberates one from constraints, freedom is the formation of a relational society whereby one can achieve more alongside others.
What I’m listening to: The podcasts I listen to most are Science vs and No Such Thing as a Fish. The first chooses questions that are trending (e.g., do weight-loss drugs really work?) and look at what scientific research says about it. They recently covered the issue of autism, combatting the narrative that autism is primarily caused by peoples’ diets or vaccines. No Such Thing as a Fish is a comedy podcast that shares little-known but interesting facts.