I share my bedroom with a snail, whom I have decided to call Bok Choy. I knew very little about snails before he turned up in a head of bok choy from the grocery store almost three years ago now. It was winter when he was found trying to escape my kitchen sink. I guess he must have been plucked from a distant cabbage patch, crated across the continent, displayed in the vegetable aisle under blinding lights, and then a final rough and tumble ride in a grocery bag to arrive in my kitchen. Abandoning him to the elements felt cruel given the momentous effort he seemed to be putting into survival.

 

Bok Choy lived for a month in a jar on my bathroom counter. On multiple occasions, I was convinced he had died because he hadn't budged from the same spot in many days. Eventually though, always, he'd wake up again. After enough of these incidents, he managed to convince me he would not die so easily and he is now a permanent resident of my home. Bok Choy has been living in his own personal terrarium until this day. My growing sentiment for the tiny creature is not like an emotional bond like I might have with a dog or cat, it’s mostly based on respect. Bok Choy the snail is one of the most terrifyingly competent creatures I have ever encountered. 

 

Snails contain no sense of hearing, no ability to communicate, no centralized brain and no biological sex. It makes sense that most humans can not empathize with snails in the same way we can with mammals, their biology is alien to our own. Bok Choy's lifestyle differs from mine incredibly. He is nocturnal, while I am diurnal. Sometimes, he’ll be asleep for days at a time. It’s actually possible for snails to be asleep for three years, though I think that if Bok Choy would attempt that stunt I would evict him at least before the one year mark. Bok Choy eats expected things, like fruits and veggies, along with some stranger things, like bones. He would certainly consume a smaller snail if I gave him a terrarium buddy. Though his movement is extremely limited, as he expels mucus with every contraction of his singular foot, he makes up for this handicap in other categories, like his over 14,000 teeth. 

 

For humans, our measurement of ability and disability comes from what our society has deemed essential to leading a successful life.  In less socially complex lifeforms, like snails, defining these needs are a bit simpler. For snails, ability equals survival. Bok Choy is very good at survival.  In the past, I’ve kept fish and turtles and a manner of other creatures that just don’t seem to be putting in their part for the whole survival thing. Conversely, Bok Choy has survived against all odds. He’s gone days without food and water as a consequence of my poor memory, gone without a proper calcium source for a year, as I did not at first realize that snails require constant calcium, and endured a host of heat, cold, dryness, moistness, jostling, food shortages, and even brazen consumption of pesticides.

 

If put in human measures, Bok Choy would be considered disabled for his complete lack of social ability, deafness, short lifespan, irregular sleeping patterns and limited movement. But for his conditions, Bok Choy is one prime specimen.

 

For humans, our needs are more complex than simple water and nutrition.  While Bok Choy faces the world as a one-snail army, our prosperity hinges on our ability to fit into and contribute to our societies. While an individual's ability is one part of the equation, the conditions that we as a society establish determines their success just as equally.

 

Just like Bok Choy is so incredibly different than me but impressive in his own way, it doesn’t seem fair to consider the competency of all people on one linear scale of abled to disabled.

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Situational Disability

If Bok Choy were to look down on us from above, enforcing his snail-centered standards, he would likely view me as disabled based on my lack of ability to go months without food. One may argue that this is a very silly example, because nobody in my species can go for months without food, but I challenge the idea that species should be the level of classification that defines normal. 

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The concept of normality, the obsession of eugenics founder Francis Galton, elevates having traits on the center of all human distributions.  But remember that exceptionality, also, exists outside of normal. A preoccupation with normality fundamentally ignores the value of diversity.  Diversity does not contain just the normal and not-normal, it is the explosion of bullet points from a single cluster to locations across many planes of dimensions. 

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Diversity and accessibility are not futuristic concepts, it's easy to forget the ways in which our society currently supports a range of abilities.  While we think of the terms disability and accommodation as being attached to a select subset of individuals, here are many more subtle ways I notice that accommodations are provided in every day life for people with insufficient ability for their circumstances:

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My whole family wears glasses, that are covered by our health insurance. 

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Most kids in middle school wear braces, to correct their naturally crooked teeth. 

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My mother uses a step stool to reach the tallest shelves to make up for her relative shortness compared to other family members.  

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Many students use planners, because they can't keep track of all their assignments with their memories alone. 

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I work at a library and often push carts of books through doorways. By instinct, the person ahead of me will usually hold open the door.

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The justice system does not punish children in the same way as adults, because their brains have not yet finished developing. 

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Beachgoers wear sunglasses to see outside if the sun is shining too brightly. 

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In a party with blaring music, a person will speak louder so who they're talking to can hear. 

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If someone wants to fix their bicycle but never learned how, they can read up on the internet to reach the same level of knowledge as an amateur bike repairman. 

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Because we live in complex societies with advanced technology, there are endless tools to supplement and improve our abilities.  In many ways, accommodations are such an integral part of human life that it doesn't feel notable at all. An accommodation might be as simple as extending your hand to your grandparent as they try to make their way down the steps, or extensive as using technology to video call someone from across the world. 

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When I mention disability, consider that while those with conventional disabled status have to most consider these topics in their every day life, the systems are fundamental to all people. 

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Situational disability refers to the state of being disabled temporarily in relation to your circumstances. For example, while a person may usually have great hearing, at a loud party their ability to hear will be limited. While none of the above examples really qualify as disability in the social meaning of the term, they all fit as mini instances of the same phenomenon. 

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Consider aging as one example of how we shift the standards for how we accommodate people due to their ability.  Every person starts as an infant, with no ability to be self sufficient.  Even though it costs the caretakers everything with no expectation of reciprocity, they take care of an infant's every needs. As toddlers, we can not be faulted for not knowing. Instead, we must be taught every word, every behavior, and every expectation. Even as we surpass adulthood, as elders also we will all eventually need more support as we decline in ability.  

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​While aging may seem removed from disability, consider that variations in health, bodies and minds are just as natural as the changes our bodies undergo over time. This spectrum of ability, and the systems in place that accommodate it, are fundamental parts of life. By labeling something as a permanent condition of disability, we distinguish between which natural variations in a ability we're willing to accommodate, and which we can't or won't. 

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When you consider that a disability is made up of both a person and their environment, recognize that the responsibility of accessibility can not only be placed into the hands of the disabled. This is because their disability status is something we may be actively and continually upholding as we are a part of the systems that disable them. 

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Complexities of Defining Disability

The meaning of disability has changed incredibly over time, and can mean very different things to different groups of people within the United States today.  

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These topics are delicate, and the subtleties can't be captured by nationwide statistics and academic literature. Instead, I looked to the stories of the people around me to develop a more nuanced understanding of the realities of accessibility. To do this, I conducted five extended interviews with individuals that have had to grapple with these questions frequently and intimately.

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Emily, a woman with Autism Spectrum Disorder (ASD), ADHD and Premenstrual Dysphoric Disorder (PMDD), spoke about how she uses the word disabled differently depending on the group of people she's with.  When speaking to her family, she would never refer to herself as disabled.  To them, a disabled person is someone that can't get through life, hold a job or take care of theirself without substantial assistance from others.  By claiming disability with this definition of the term, she feels that she would be making her problems out to be much bigger than they are.

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However, among her college friends, many of whom are also disabled, she feels comfortable using the term to describe herself.  In this social circle, the disabled label means identifying the barriers that she faces that most others do not, whether or not she manages to overcome them. 

 

How disability is defined by different institutions also varies. According to the ADA:

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"A person with a disability is someone who:

• has a physical or mental impairment that substantially limits one or more major life activities,

• has a history or record of such an impairment (such as cancer that is in remission), or

• is perceived by others as having such an impairment (such as a person who has scars from a severe burn)."

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This definition, however, does not necessarily align with people's use of the term disabled in everyday, social context.  The definition under the ADA is concerned with encompassing those that may face discrimination for their disability or by being associated with disability.  Cancer, for example, is likely not to be considered to be a disability, as it is a temporary and acquired condition.  Rose, a woman with a chronic disease in remission, expressed surprise when she saw this definition. While she might have considered thinking about herself as disabled in the past she would not now. Therefore, she found it interesting that her condition would still place her under the definition even though it does not impact her at the current moment. 

 

In Emily's personal life, the meaning of disability is about whether she fits into being disabled as a social categorization.  However, when we examine disability in the lens of addressing a problem, as you can see with the ADA, its easier to expand the definition of disability. Whether or not people actually have a significant limitation does not necessarily mean they will or will not be impacted by discrimination, and thus, the definition of the ADA was formed.  ​The World Health Organization's definition of disability is similarly expansive, encapsulating one in seven people in the world experiencing disability at some point in their lifetime.

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Just because it does not fit all situations does not mean that there is no use for the traditional meaning of the disability. Luke, for example, experiences a type of muscular dystrophy which is a severe and visible congenital disability.  Identifying and being identified as being disabled is something that he "completely accepts".  Luke needs assistance for almost all physical activities, including moving, eating and using the bathroom. For Luke, disability is a neutral concept and it simply describes his experiences. 

 

Rose, who has Crohn's disease in remission, ADHD, anxiety and depressive disorders, personally reserves the term disabled for others.  Other people she knows, including her twin brother with ASD, seem to be much more limited by their conditions. Because the challenges she faces from her diagnoses are so different and her success in the major areas of her life are not limited, it doesn't feel correct to her to label herself the same as these others. 

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The issue, however, lies in this: if our explicit system of accommodations is synonymous with disability, what systems do we have to accommodate similar cases that lay outside the strict definition of disability?

 

Though Rose does not consider herself to be disabled, it doesn't mean she doesn't have needs.  Even in her overall treatment, she describes being caught up in how severe her condition is compared with others. She says that it’s easy to get wrapped up in other people and seeing how bad it is for them. "Even with having moderate [Crohn’s], how do you even define what moderate is?" 

 

Rose also opened up about her tendency to downplay her own symptoms and the anxiety she often feels over whether she's deserving of special consideration. In the past, this has even made her question whether it makes sense to receive the more intensive treatments for her condition, though they were recommended by her doctor. Because there is no clear system in place for Rose defining the boundaries of what she deserves help for and what is normal, Rose is left, often alone, to figure out and advocate for what help she needs. 

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I asked each of my interviewees a similar question. How should the wide range of disability be accommodated differently?  As a response, I was met with confusion. One asked me to repeat the question. This confusion arose because the answer seemed so obvious the question approached offensive. Eventually, every person shared a similar sentiment: everyone should be accommodated according to their needs.

 

Disability as a social concept is a discrete category. A disabled person requires a lot of external support and an abled person requires none. Individual needs, however, fit on a scale of needing support or not independent of whether a person is classified as disabled. 

 

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Expanding Disability

Every single person with disability is so incredibly different. I do not, and can not pretend to represent the perspectives of the everyone, the majority, or even a percentage of those with disability.

 

Speaking to just a small group of disabled people has revealed a couple of these areas of diversity. 

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Severity. Luke, who relies on a 24/7 medical aid , requires a lot more help than me with my ADHD.  This axis of extremity, however, does not at all impact the validity of a person's need for accommodations.  Just because Luke needs a wheelchair to walk at all does not make a person's legs less tired if they've been walking on an day long hike. Severity, also, is not so easy to express on a linear scale. Because accommodations like technology and assistance can do a lot for a person, severity can vary over time and within different situations. Rose for example, receives routine infusions for her condition, which makes her condition non-limiting. However, if she were to live before such treatments were available, her condition would likely be considered much more severe 

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Visibility.  People with visible and invisible disabilities face different challenges. Rose struggled to get support for her ADHD as a child in school, and instead was assumed to be lazy, uncooperative and unintelligent. Her twin brother, who has very visible ASD, had no issue receiving accommodations for his disability. Rose also mentions how when she needs something because of her diagnoses, she often has to bring up an uncomfortable and personal conversation in order to be considered needing of accommodations.  People with visible disabilities face other issues, especially social stigma and assumptions of not being able to be independent. Rose explained how many people didn't even try to connect with her brother or let him figure out things on his own. Even though he has above average intelligence, people wouldn't treat him that way. 

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Mental vs. Physical.  Just like how Charlotte needs a monitor to regulate her blood sugar, she also needs extra support for her ADHD.  While both are physical conditions, as brains are an organ of the body, medical science has not yet advanced enough to understand the physiology of many mental conditions.  Because of this, our medical understanding of mental conditions is constantly changing.  Unlike how many physical conditions can be confirmed with an easy test, many people with mental health diagnoses must advocate for themselves in order to get care.  Because of the complexity of the organ that is the brain, people with mental conditions often face an extra barrier of distrust and misunderstanding. Many mental conditions are also invisible, so they face often face the same barriers associated with invisibility. 

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Acquired vs. Congenital.  People that are born with their conditions and those that acquire them over their lifetime experience their disability in different ways. For people with congenital disabilities, meaning it is present from birth, having a disability is normal because they've never experienced anything else. Rose talks about how it was hard to tell doctors about the symptoms she'd been experiencing, because she had no way of knowing if what she was talking about was normal or just being dramatic, because she had no alternate frame of reference. On the flip side, a person with an acquired disability, such as losing a limb in an accident, will experience challenges that a person born without a limb does not. If a person is born disabled, they've grown up with that understanding, while a person acquiring a disability must adjust their perceptions of themselves and what is and is not accessible to them. 

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While the framework of disability is useful in many ways, it groups a massive amount of people with varying and unrelated needs. By expanding the definition of disability, it's possible this concept could become even more muddled.  Emily shared her thoughts on this, saying that disability is a totally different state than having a cold or something temporary, because disability impacts your whole life. 

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Living at the Border of Disability​

When we think of disability on a binary of normal and not normal, we forget the other unique aspects that make up each disabled person's experience.  Interviewees S and Charlotte spoke in detail about secondary parts of themselves that sit on the edge of disability. Their lived experiences navigating this grey zone reveal some insights into the benefits and limitations of restricting or expanding the social definition of disability. ​

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S is a student with inherited Holt-Oram syndrome, which presents as congenital defects in their hand and wrist. They also have Complex-type Post-traumatic Stress Disorder (PTSD).  S compares their experiences with both diagnoses. They have no problem labeling many other people with PTSD as disabled, because the condition can hinder day-to-day activities.  For themself though, it's hard to say.

 

The disability framework helps them in many ways.  When receiving medical care, PTSD as a diagnosis is useful for a quick explanation that medical personal understand. In school and work, its useful for PTSD to be viewed like a disability, because that means that they can receive the accommodations that they need. Even when speaking to friends and acquaintances, its useful to understand it as a disability because in that way they can communicate that they may require patience and understanding without having to say more. 

 

Having to provide a more detailed explanation, in the case of S's PTSD, has the potential to make the situation worse.  As an example, S mentions if they're walk down the street and a flashback is triggered, they don't want to have to explain how a certain noise reminded them of a sound that they had experienced when they were assaulted, they just need patience and support.

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S struggles with some people's perception of PTSD.  They recall their past experience working as cashier. On several occasions they'd been triggered while at their station, and felt they had to make up some excuse to leave and recover. In one particular instance, they remember standing in front of their cash register, doing their work as usual, and the next thing they knew they were in the bathtub in the middle of the night.  Dissociative amnesia is one possible symptom of PTSD, but the severity is not understood by most people. Sometimes lying is the only way to be taken seriously. 

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For this reason, S likes when PTSD is considered like a disability, but there's a lot of stigma around this. Their doctor, for example, hesitated in sharing S's diagnosis with them. This caused frustration. 

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"Being told I had PTSD didn't give me PTSD nor did it change my symptoms. It helped me tell people 'hey by the way, this is happening to me because I have PTSD'" - S​

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Emily described a similar experience with ASD. Her family resisted the term "autism" for a long time, because they thought it would define her and make her see herself as lesser. In truth, the denial of her condition ended up making her feel like a failure for having more needs than others, with no explanation in sight. The label of autism and the label of disability made it easier for Emily to understand and communicate her needs in order to succeed, it didn't create them. 

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S, due to their trauma, was increasingly vulnerable to the negative affects of their struggles being unrecognized. Gaslighting was one technique used by their abusers in their childhood, in which they were manipulated to think that they were not experiencing abuse.  In that way, professional acknowledgement of the symptoms they were experiencing was incredibly important to their ability to get treatment. 

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Despite all of this, there are still some drawbacks that S sees in their PTSD being seen as a disability.  Their PTSD is not disabling the majority of the time when they receive the right treatment and take care of  themselves in the right way.  They realize the disability label may lead those less educated to make assumptions about what they can and can not do without further communication, openness, curiosity and empathy.

 

PTSD doesn't fit cleanly into one box. While most people think of disability, especially in the mental context, as being congenital, PTSD is acquired. But unlike most acquired diseases, S can't just cure their condition with effort and the right treatment, they may need to continually need accommodations even with therapy and medication.

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Charlotte, also, relates another part of her identity with disability.  While she has Type-1 Diabetes and ADHD, she's also a transgender woman. 

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As a lesbian, my instinct is to cringe away at the concept of someone comparing an LGBT identity with disability.   Not long ago, same-sex attraction, or "sexual orientation disturbance" was an official medical diagnosis. By pathologizing sexuality, it both implies that it is something wrong and and unnatural and suggests that it should be cured. 

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However, while "transsexuality", later "gender identity disorder", was later removed from the list of diagnoses along with homosexuality,  a form of medical diagnosis for transness still exists.  The diagnosis of "gender dysphoria" acknowledges a condition that can be treated medically, in many cases by medications and procedures supporting physical transition.

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Charlotte relates many of her trans experiences to her experiences with her disabilities.  In her case, she wanted to feminizing hormones, so she went through the process of advocating herself to a doctor, going through gender-based therapy and receiving a diagnosis in the same way that she had for ADHD.  When her trans status is viewed in a similar way to a disability, it means that her needs are legitimized and financially supported. Because the 'gender dysphoria' diagnosis exists, its recognized that her medical interventions are not a cosmetic choice, and can be covered by her insurance. 

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Charlotte also considers the dangers of associating transness with disability.  To her, disability is a box that means access to support and resources. However, to receive care she feels like sometimes she may be forced to fit her experiences within the confines of that box.  Also, when being trans is medicalized, she fears that people will not understand the breadth of trans experiences.  To other people she knows, their gender identity might not be associated with gender dysphoria as described in the diagnostic manual or necessitate medical interventions like with Charlotte. To them, they might have a similar reaction to me with same-sex attraction being medicalized. Why do we need to classify this positive trait as something that needs to be separated and solved? 

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With either option, Charlotte fears the lack of consideration of the diversity of trans experiences and a misunderstanding of what it it is that needs to be solved. 

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As Charlotte explains, the people aren't what needs to be cured, it's their situations. The issue with the previous medical treatment of transness was that it treated being trans as the core issue.  Conversely, the new approach acknowledges transness isn't an issue because of an innate wrongness of identifying as trans, the problem we need to solve for is you not being able to live happily without these interventions. 

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This same diagnosis dilemma extends beyond gender and sexuality.  It's a hotly debated topic within the deaf community, for one. By labeling deafness as a disability, some deaf people feel that this disregards the culture, language and traditions that belong to deaf community.  By assigning something to be a disability, there is an implication of it being a subnormal condition.  These deaf individuals are proud of their capabilities and their communities. They know that their lack of access comes from a mismatch with the world around them, not an inherent deficiency. 

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As we've established, disabilities are not wrong or unnatural, but just one representation of the natural variations that make up humanity. Not in all cases do they require or suggest a medical treatment.  However, with how disability has been viewed over the course of history, it's not a neutral concept, but a negative one. When we assign a medical label to something, we pathologize something that doesn't always need to be pathologized. A disability label is assigned to the person, not their environment, though it's the environment that needs solving, So maybe, nothing should be regarded as a disability?  Or everything? ​​

 

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Accessibility Without Disability

We've gone over the difficulties of grouping so many conditions together under one term and the complexities of assigning a something to be a disability.  At the end of the day, disability isn't a solidly defined category but a framework that may be either beneficial or detrimental. 

 

When I was laying in my bed, wondering about what sort of accommodation should be appropriate for mono, in no way did I believe that my experience with illness was a disability.  Even for my ADHD, I wouldn't usually refer to myself as disabled, because disability status just doesn't ever seem like a productive conversation. In both situations, I want to be treated with respect and consideration of my limitations, irregardless of whether what I'm experiencing counts as a disability. Ideally, disability would not have to be defined as the box in which people receive sufficient understanding, support, and resources for what they are struggling with. 

 

So let's try separating the concepts of disability and accessibility.  Instead, let's expand accessibility outwards to all of the ways we experience diversity in human ability: situational, temporary, permanent, limiting and enabling. As I continue in this piece, I will attempt to refer to this type of diversity as the ability spectrum. 

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​By generalizing this topic, we're put in an interesting situation.   Instead of accessibility being a civil rights issue for a minority, instead this becomes a fundamental dynamic of all humanity and society. This does not mean though, that if disabled people are a minority, their needs do not matter. Instead, I mean that separation of the issues pertaining to the abled and disabled is not possible. Instead, disability is an amorphous, cultural concept that does not encapsulate the range of people that require accessibility or accommodations.