My comfort stories are about crews. Here me out. An oddball captain recruits a crew of people, all with their unique quirks, but together they make a killer team.  Think the team of losers in Monsters University, the pirate crews of One Piece and superhero team-ups like the Avengers. Everyone on a crew comes from a totally different background with radically different abilities, but fate has pushed them together. And yet, they trust each other with their lives. Because of the circumstances of the literal or metaphorical ship, they’re stuck together, meaning they must learn to adapt to each person's strengths and faults. 

 

Let’s delve into why this trope is so appealing. In a group of oddballs, everyone belongs, no matter how weird.  Instead of scoring people on a prewritten scale, misfit crews are all about finding ways to value every person, including their individual quirks.  It's not a stretch to associate this trope with accessibility, pirates always seemed to dominate the seas even with their peg legs and eyepatches.

​

As we've established, ability and disability are context-dependent.  Context can be simple, like loud background noise making it difficult to hear, or as complicated as the nuanced nature of social systems.

​

​

Accommodating in Social Interactions

While our medical and legal systems are the enactors of change on a population level, on an individual level, what impacts a person most is their relationships with others around them. 

​

I'm lucky that I entered my conversation with Rose already being a close friend.  Her list of diagnoses is long enough that she had to check her phone to recall them all. While she had been given accommodations, such as a free pass for the bathroom in high-school, these were just solutions for tiny cracks in her life when her true struggles could be compared to a gaping chasm. 

​

In school, Rose struggled deeply with depression.  Because of her depression, paired with her Crohn's and Anxiety, going to school on many days felt impossible. She admits to playing up her Crohn's symptoms sometimes to get out of school, paralyzed by her debilitating mental health issues. Eventually, Rose missed so many school days she was no longer able to attend her mainstream public school and switched to a flexible alternative public school for people with a variety of issues.  At the flexible school, Rose struggled as well. Even though she could do class online, avoiding the immense pressure Rose felt when she went to school, new challenges arose.  Because of her ADHD, Rose had a really hard time with the loose deadlines and hours of the flexible school. By doing class online with many other students that also did, Rose was still harshly affected by isolation.  When Rose graduated high school and her Crohn's entered remission, COVID lockdowns didn't help to break her away from her isolation. 

​

Now Rose struggles with the consequences.  She fears that missing out on social development in those years has impacted in her in a way she won't be able to recover.  Rose feels others have learned to interact with each other in a way that she has to be continually learning.  While Rose has been receiving treatment for her mental health issues for many years now and her immediate struggles related to them have lessened, Rose still has to deal with socialization that has been impacted by her past experiences. 

​

As humans, social interaction is as essential as food and water. For many of us, belonging can be more important than survival.  While on paper, Rose's symptoms were abdominal issues, inattention, and low mood, these ignore the core of what Rose continues to be challenged with today.

​

Luke told a similar story. Initially, I didn't think that I would relate to Luke's struggles.  Because of Luke's severe congenital muscular dystrophy, he's never been able to walk, and his physical abilities have declined to the point today that he relies on machines to help him eat, breathe, clear his throat, and more.   After speaking to Luke for a while, I learned that the core of his fears of the future were not of his physical body, but his relationships. Because of his health and accommodations, there are many ways that Luke is limited socially.  He always has to deal with the presence of a caretaker in his vicinity,  which can impact the ways that he may converse with other people.  Because of his health, his ability to engage with people in person is very limited, and when he wants to hang out with friends, they have to come over to his instead of him to theirs'.  

​

What both Rose and Luke really want is acceptance and belonging.  If we were to imagine social groups as a building, in some ways, Rose and Luke are limited in their access.  In Luke's situation, if he's befriending a group of other students at his college that studies together in the library, they have to decide whether they will move their study location to Luke's house so he can join, or keep studying at the library and he can not. Rose's lack of experience with her peers means that she doesn't always know the right way to behave. When a person interacts with her, they can decide to give forgiveness and understanding, or decide it isn't worth it.

​

In social interactions, like anything else, we decide which inabilities we're willing to accommodate and which we can't.

​

This decision whether to accommodate or not in social situations is very complex. In an idealist frame of mind, we should all accommodate those around us. However, we also need to identify when we're being taken advantage of, disrespected, or our care is not returned. 

 

As a child, my mother struggled to drive me and my siblings anywhere on time. This made me angry at her, until I ended up developing the same problem when I grew old enough to be my own courier. The anger switched to myself, as I met the social repercussions of people frustrated with me arriving late time and time again. I could tell my friends and teachers that "my issue is a result of time management issues and I really do try and care and that I understand how it effects everyone around me and I hate that I am doing it too" but at the end of the day it is up to others to decide if I am sincere.

 

The assessment that each of us make as we decide whether an action against us is worthy of frustration or forgiveness often lies in a question of ability. The question at the root of people's opinions of my character seems to come down to: Is it truly possible for arriving places on time to be so difficult for one person despite it being so easy for everyone else?  If arriving on time is easy to do, it means my tardiness means irresponsibility or disrespect. If it is truly that hard for me, it does not mean that I should face no consequences for my tardiness, but ultimately, the consequences have much less implication of a personal slight. 

Certainly, we can not excuse all wrongdoings as a result of inability. Social rules aren't something that we can decide on in a committee and enforce like laws. Individuals must decide with their own discretion the implications of the actions of those they interact with.  Instead, what I wish for is for each of us to increasingly consider the spectrum of ability when we make social decisions.

​

The core of why we want accessibility is not just equal access in technology or physical institutions. While no one is owed conversation and community, equity means that a person's abilities and disabilities not unnecessarily limit their chance at belonging in our society.  When reflecting on the passage of the Americans with disabilities act, as disability rights advocate with cerebral palsy Denise Sherer Jacobson says, “You can pass a law, but until you change society’s attitudes, it wont mean much".  We want to better handle the ability spectrum in social contexts, but how?

​

Let's explore some of these complexities of how we handle ability dynamics in social interaction.

​

​

Fight Injustice, Accept the Expected​

Emily talks about how people treat her differently whether they have decided that her symptoms are or are not normal.  Emily has been diagnosed with PMDD, (premenstrual dysphoric disorder), for which she receives prescription medication and attendance flexibility in her college classes. While many women have disabling affects from their menstrual cycles, they are undertreated and underdiagnosed.  Many imagine that this ignoring of women's symptoms comes from men, but as Emily explains, she's gotten the strongest dismissals of her symptoms from women.  Her grandmother does not experience the intensely disabling effects that Emily does on her period, so it's easy for her to dismiss what Emily is experiencing as overreaction and argue with her need for accommodations. While those that have not had periods may have a harder time deciding that they know how bad they can get, a woman who has experienced periods can be installed with the false confidence that they know everything there is to know about what it's like to have one. 

​

Emily's issues are not foreign to me. From the age of 12, my menstrual cycle has included one day per month of debilitating pain. I remember so distinctly my writhing on a summer camp bathroom floor, a mistyped text to a friend saying that I was sick and to cover for me and not look for me, and my shaky voice in response to the woman a few stalls over who wanted to get medical help because of the sounds of my repeated vomiting.  I remember the excuse as I fled my corporate office in a hurry, then texting a male coworker as I lay shaking on the floor of my bathroom covered in my own vomit that I physically could not get up to open my laptop and notify my superiors of my absence but also I just had food poisoning and would be back in the office the next day. The "I'm okay"s and cover stories were necessary dishonesties.  I've found that many can not understand that I could experience something so impairing that can not be summed up by the name of a diagnosis or fixed by a visit with a doctor. In truth, I had spoken to several doctors about my symptoms, been thoroughly medically tested, tried the medications, and the only diagnosis appearing on my medical record is "period pain" (dysmenorrhea). In the medical sense, there's no need for a different diagnosis, as nothing else had been identified and no different treatment could be provided for me.  A diagnosis might not have been useful for me medically, but it would have made all the difference in a corporate world that measures systematically the value of each employee on standards that only give allowances to things like official and medically verified disability or disease. 

​

​

Adjacently, all of Rose, Emily, Charlotte and I have all mentioned noticing a similar phenomenon with our mental health diagnoses.  People who share the same symptoms are the most likely to dismiss our desire for mental health treatment.

 

When a person has struggled with something and were told that this is something they will not receive help with, it makes sense to return that same expectation onto others.  It's not uncommon for parents of children with genetics-linked conditions to get a diagnosis soon after their child.  When Emily first explored getting testing for ADHD and ASD, she experienced massive pushback from her family.  Her mother dismissed her symptoms, claiming that they are what everyone has.  Emily pursued testing anyways leading to many arguments with her family, but at some point a switch flipped. Today, Emily's mother has been diagnosed with ADHD as well, and the two working together are beginning to make other family members more informed of the condition. My therapist, similarly, specializes in coaching adults with ADHD. She tells the story of how when her son was diagnosed as a child, she recognized the symptoms in herself and finally got the treatment that she needed as an adult. Her experience with this inspired her to pursue her career helping people with her diagnosis.

 

This pattern continues in my own family. My mother has experienced anxiety throughout her life, but she didn't understand anxiety as a medical condition until later in life. When my sister began having her own struggles with anxiety, my mother wanted to help, but was just figuring out how to treat herself alongside her daughter.  Because she had gone through life so far using alternate methods of coping with her own anxiety, it makes sense that she initially opposed my sister using anti-anxiety medications. Making the decision that medication is the best option for her daughter isn't just that, because it has implications on how her own struggles should be treated as well. 

 

To these older family members, their own experiences form the basis for what is normal, meaning that by accepting that their child needs special accommodations, it means that those same standards should be applied to themselves.  This thought process points again to our social conception of normal determining whether or not someone should be receiving of extra help. This seems rational- there's no use spending energy worrying about something in your environment that will not change, instead it makes sense to focus your time on how you will adapt internally. 

​

Rose often had a hard time identifying which things she experiences are symptoms of her diagnoses. She explains that it's hard to see yourself as needing help when that’s how you’ve been your whole life. It’s easy to not get treatment if you don’t see it yourself, because you can’t know what it could be like. 

​

Luke, overall, feels content with how he's been treated for his disability.  With many questions I asked him over the course of our conversation about how he wishes he could be treated differently, he explained that he's never really thought about it before. While Luke has many limitations because of his disability, this is how it's always been for him.  This doesn't mean that he's okay with people treating him poorly, but he accepts the many things that aren't possible for him.  It's easy for people to feel sorry for Luke, but if Luke were to feel that pity for himself, he'd be miserable. ​

​

It makes sense to focus on what you can change instead of being meaninglessly discontent, but as our technology and culture develop, our ability to accommodate changes also. This makes it difficult to know what is worth making a problem, and what should be accepted.  In the example of generational mental health, like with Emily and I, this comes to the forefront. Getting a diagnosis of anxiety disorder or ADHD may not have helped our parents when they were growing up, as treatments and understanding of these diagnoses were not well developed, so it makes sense not to consider a diagnosis as an option. 

​

The environment shapes social context, which determines which requests are acceptable and which are not.  While Rose needed a special accommodation to leave the classroom to go to the bathroom when she was in high school, when she asked for this accommodation in her college classes, she was laughed at.  Rose didn't need a special accommodation any more, because permission to go to the bathroom was now assumed. Instead of needing a special accommodation, the social rules had determined that the bathrooms are accessible to all without needing a medical diagnosis. While high school students are obligated to go to class, college students are adults paying for their own education, so something like using the bathroom in class is no longer in the teacher's control.  

​

Rose isn't alone in noticing some of these differences between high-school and college. I, like many other students, had to adapt in how we write absence due to illness emails.  In high-school, any request for absence was met with skepticism, so I would need to turn in a doctor's note and advocate for why I was unable to go to class or work. In adult life, professors and managers do not want to hear details of your illness. My initial tendency, due to my past experiences of skepticism, was to try to share my symptoms and convince authorities that I am deserving of an absence.  Quickly, I found that the social expectations had changed. Now, I do my best to avoid my desire to prove myself in the interest of sending a professional email. 

 

Even over the course of ones life, situations change.  Which accommodations are assumed and which are special change as well. Our social context determines which variations in ability are accepted and assumed to be naturally accommodated for, and which are not.​

​

​

The Consequences of Expectations of Ability

When we interact with people on a day to day basis, we are forced to make many assumptions about each individual to understand in what ways we should treat them. If a person appears to be normal, our tendency will be to treat them as such. 

​

People with invisible disabilities, especially, know the burden of being assumed to have more ability that they have. Many people with conditions that are not easily perceived in day to day interaction struggle with the prejudice and misunderstandings that come from people doubting the legitimacy of their effort in the face of their challenges. 

​​

Because it can be hard to determine what barriers a person faces from looks alone, medical diagnoses often act as a stand-in for the legitimacy of many conditions. But the medical diagnoses were created as a means to a a treatment, and even within the non-disabled range of abilities, people may face similar challenges that do not precisely line up with a medical diagnosis. 

​

As I write now, I can not ignore the situational irony of my own circumstances. I have inattentive type ADHD, which fitting the diagnostic criteria is related to having a hard time with sustained tasks requiring mental effort.  Even as I write about limitations, beginning with my own, I am performing a task of which my condition challenges me for a class in which I compared by grade with the same standards for everyone across the ability spectrum.  ​

​

This is not to claim that the expectations put upon me by this course have been unjust. Instead, this classes' standards are mostly self-imposed as I use this piece as an opportunity to test the limits of what I can achieve as a writer. It's hard not to look at the writers around me and consider whether their relative successes indicate my own failures. The term ADHD encompasses a wide range of experiences, and my additional physical and mental health struggles that I have experienced this semester can not be placed cleanly on a scale that indicates where I can succeed and where I can not. 

​

Apart from the social implications, which considerations for my symptoms are standard shouldn't even matter.  Like my guidance counselor told me, I can just do the best I can, and communicate to professors if I can not do more.  However, put within the social context, what's normal suddenly does matter.  Morality can be described as the enforcement of social rules on yourself as you would with others. Our brains are fundamentally social, so the same drive we experience towards evaluating whether we like or do not like others applies to ourselves just the same. 

​

Just like I would not like another person if they were to ask for less standards than others on a false basis of inability, I would not much like myself.  When people's assumptions are of more ability than is true, it can damage a person's self esteem.  

 

While there is no formal diagnosis, more and more people are beginning to associate ADHD with rejection sensitivity.  Rejection sensitivity describes the phenomenon in which a person may anticipate and overreact to rejection from people around them.  My therapist explains it as often occurring in her patients because of people with ADHD's negative responses of friends and family to their behaviors in childhood.  Rose remembers how teachers considered her to be lazy in grade school for her disorganization, often punished by not being able to attend recess and later, detentions.  Rose cared deeply about school but was limited by her ADHD symptoms. It makes sense that today, she struggles with expecting misunderstanding and rejection.

​

Even for this project, I struggle with receiving feedback from my peers and professor for similar fears.  I've always struggled to follow the writing processes that were prescribed to me by teachers throughout grade and high school, but would receive a lot of praise for the final result. Because my brain works a bit differently, the process that makes sense for me is going to be different than for everyone else.  The pressure of high expectations, and my memories of receiving confusion and disappointment from my half baked work, makes it harder than I wish it was for me to share my writing process even today. 

​

I relate to Charlotte and S as they share similar negative impacts of expectations of ability. Though Charlotte always felt that there was something different about herself, her concerns weren't taken seriously by her or those around her until she was suicidal. When they could validate a legitimate negative effect of what's going on with Charlotte is when it became obvious that Charlotte had issues worthy of some treatment. S received a similar change in perspective from their parents after a similar situation. Before what could be clearly interpreted as a serious medical incident, it was easy for them to dismiss S's PTSD symptoms. 

​

To this day, Emily severely struggles with self esteem issues. For her sensory issues and meltdowns as a child, she had been repeatedly punished and not taken seriously.  Even though she knows now that these are symptoms of autism and she wasn't a bad kid, it can be hard not to internalize the ignorance of others. Neurodivergences, like autism, are common in niche communities that step outside of our social systems. For example, furies, a subculture of people that dress up like anthropomorphic animals, have huge percentages of neurodiverse members. The expectations of behavior for animals differ greatly from the expectations put on humans, allowing neurodivergent members to escape from the confines of social expectations. 

​

Even outside of these disabled and neurodiverse examples, many people are negatively impacted by expectations of ability. When I was first interested in coding in high school, I struggled to learn anything from the first meetings at my local robotics club.  While an older student ran an exercise, I found myself so hopelessly behind, I couldn't ask for help.  With my limited past experience using computers at all, I was stuck on the things that were assumed we could already do, like using the file explorer.

​

In order to prevent these situations from happening, it implies, then, that we should drop our expectations of ability.  If we were to allow for the possibility that anyone we interact with may have a limitation,  social accommodations would be more accessible. However, we may then encounter the opposite problem. 

​

​

The Consequences of Expectations of Inability

Luke arrives at a restaurant with his family. He converses with everyone normally, looking through the menu for what he wants to order. Luke is a legal adult with no mental disability, though his wheelchair, limited movement, and a breathing device clearly display his physical disability. 

The waitress arrives, quizzing each member of Luke's family for their order. Instead of turning to Luke next, she goes to his mother and says "What does he want? "

​

When Luke corrects her, she's quick to apologize. The waitress had meant no harm. In fact, she'd wanted to help out by not making an impossible request of someone who is mentally disabled.  But while these assumptions may be well-intentioned, they fundamentally affect the lives of someone like Luke.  Luke is studying software engineering, and knows that he'll have an extra barrier to face when trying to prove his abilities when he goes for a job interview.  Before Luke gets to know someone, he knows that many may underestimate his social abilities and rule out the possibility of being his friend.  In a perfect world, Luke wishes that his visible condition wouldn't be so noticed by people at first. He's not ashamed of what he looks like, and doesn't want to change that, but he also wishes it wasn't as big of a factor in his social interactions. 

​

I entered my interview with Luke much more nervous than any of the other conversations I had had so far. If he was a stranger I feel it may have been easier, but Luke is my cousin. 

 

One memory stands out from when I was a little girl. I was with family at a campground going for a hike on one of their paved walking trails. I remember saying some comment like “I wish I had a wheelchair like Luke's, my feet are tired from walking so far.”  

 

Social etiquette around disability must be taught to children at some point, and this was my moment. I remember my aunt, usually a very sweet woman, pulling me aside and saying the strictest words from her I ever remember her telling me. She told me that I could never say that, that I can’t imagine what he is going through. While I remember this conversation for its intensity, I'm not sure my take away was correct. After that, I didn't mention his disability again, and I especially didn't say anything positive about it. 

 

I’ve sinse had many years of social norms drilled into me, but in some situations, I still don’t know what’s right. Social etiquette taught me not to talk about conditions like this, so how do I explicitly talk about it? How do I know I’m saying the right thing?

​

It doesn't make sense for me to feel this way about Luke but not any of the others I've interviewed for this project.  However, the social norms I've learned about how to treat someone with a severe physical disability like Luke's varies immensely from the treatment of invisible disabilities like most of the others I spoke to. 

​

Research in cognitive psychology sheds light on the fact that being a minority in a group can have very real negative cognitive impact.  "Token" group members are shown to receive differential treatment and have increased self awareness, which can lead to decreased performance in cognitive tasks like focusing and memory recall.  While these studies primarily pertain to racial and gender minorities, I imagine that visible disability status would have a similar affect. 

​

By assuming a person's inability, we may actually limit them in their ability to succeed. Another university student spoke about how as a wheelchair user she wasn't allowed to participate in any physical education activities, for fear of her fragility. However, the school staff were too cautious, disallowing her from activities that she could do even with her wheelchair. By assuming her overall physical inability, she may never have gotten to show her physical abilities, that she now demonstrates as an athlete on the university's wheelchair basketball team. 

​

S's presentation of Holt-Orem syndrome is invisible to the untrained eye, while their father's is noticeable to everyone he encounters. S compares their experiences.  Growing up, S's father received a lot of bullying and ignorance for his condition.  Throughout his life, he had to work hard to prove them wrong. Even though he had less fingers and shorter arms than others, the only real ways this affected his life was little things like fastening buttons. Instead, the real consequences of his condition were the social ones. 

​

S has the opposite issues. While S's father is not disabled by the condition but faced struggles due to the assumptions of his inability, S is disabled by their condition but faces struggles due to assumptions of their ability. 

​

S has severe and limiting arthritis in their wrist due to their condition, but they didn't get help for it until they were older.  Because S's father had fought his life against assumptions of his inability, it makes sense that he'd push for his child to not deal with those same assumptions. This backfired, with S receiving medical help much later than they should have. 

​

While these stories show the consequences of the wrong assumptions, its complicated. What's right for someone, like S's dad, might not be right for someone with the same condition, like S. 

​

​

Trust and Accommodations

Again, the treatment of ability in interpersonal relationships can not be established and enforced like a law. In interpersonal relationships, accommodation for inability can not be forced, in order to create a genuine connection, they must be given.  When I asked several people to describe how they wished they could be treated differently, they struggled. Like they explain, they're not owed, nor do they expect to be owed special treatment or understanding of their specific condition from others.  If they didn't have the condition, they would likely behave in the same way. 

​

The key to the most ability inclusive behavior in interpersonal relationships is trust and kindness.  However, these things are usually only earned as they spend time together and become closer.

​

Trust is a hard thing to give. Emily talks about the challenge of it in relation to the treatment she's received from different professors.  She doesn't blame any of the professors for the policies, but her favorite asks no questions and imposes no limitations. Instead, the professor trusts that students will only miss class when they need to.  This is incredibly helpful for Emily, who has a lot of combined health factors that can be hard to explain that may cause her to miss class. Just because this is best for Emily, doesn't mean it should be how it is for all professors.  We'd like to trust everyone to take what they need to, but people just don't always do that. 

​

In a close relationship, however, by getting to know someone closer there's blossoms the opportunity to have trust. When you know a person's character, it's possible to put total faith in their description of their abilities and requests for what they need.

 

When the concept of accommodations are abstracted out so much, they resemble a simpler concept: kindness. This word should be approached with a healthy dose of skepticism. Supporting a disabled person's rights to access should be the norm, not a kindness. While we all hopefully agree that access for the disabled is a right, we must also figure out how this right transfers to the broader spectrums of ability and disability.  In blurrier presentations of ability-based limitation, how we respond becomes a question of whether to trust or not to trust. As we risk consequences to ourselves by trusting a person about their limitations in the face of uncertainty, to be more accommodating is to be more kind.

​

To not be kind?

What I really mean is: what are the limits to the kindness we extend? 

​

Like lawmakers surrounding the ADA debated, when does the cost on the majority become too high in benefitting the minority?  Rose struggles with this. The price tag on her treatment before health insurance is greater than what a middle class worker could make in a year. 

​

While Charlotte cares deeply about accessibility, she's struggled with the demands of others on the committee for accessibility in her living community. Some events have been cancelled or limited because they couldn't fill every accessibility concern. By having to consider every individual case, Charlotte sometimes feels that they're limiting their overall accessibility. Charlotte says, "It’s really easy to get burned out, there's already so much stress from everything".  

​​

Where does the line lay between what is owed, what is kindness, and what is not possible? Though clear rules would be helpful, real life unfortunately can not be so simplified.  

​

Even if you are not involved with the development of products, healthcare, or one of the other countless spaces associated with accessibility, you are the designers of accommodation systems in the form of the way that you interact with the range of abilities around you.  The best we can do is enter each situation as informed as we can, as open minded as we can, as kind as we can, but in the interest of forming real solutions.

​