Preface:
What are reasonable expectations for invisible disabilities? Specifically, I am asking to consider what are reasonable expectations of others to be considerate of an invisible disorder?
The question keeps coming up around me, causing me to work the problem over repeatedly in my mind.
My wife is going to school for her master’s degree, and her program focuses on autism and related therapy. Our son is diagnosed as having Level 2 Autism Spectrum Disorder. Recently she explained in a conversation that with level 2 and 3 autism (moderate to severe) it is the parents who suffer the most. With Level 1 (high functioning) it is the individual who suffers the most, because they're expected to act normal since the disorder is not apparent.
While this is not the first time it has come up, it is the first time I have felt compelled to write down my thoughts on the matter. It is an exercise more to get it out of my system and force myself to structure my thoughts more clearly.
I have diagnoses for several mental disorders and am very likely high functioning on the spectrum according to my psychiatrists and psychologists I have had over the years. I share that merely to give context to where my thoughts on the matter come from. I have often been at the unpleasant end of people expecting more typical behavior from me and I have fallen short. So, my opinion is not coming from an outside observer who cannot empathize. My opinion is, however, still subjective and likely disagreed with by many, and I do acknowledge that.
Discussions:
I will present three examples here and analyze them, but I will leave final thoughts for the conclusion.
1. "An invisible disability is a physical, mental, or neurological condition that's not immediately obvious to others, but can impact a person's daily life."
In a casual conversation with a stranger, you may accidentally trigger them, or they may accidentally trigger you. However, I do not think this is the offense that it is too often framed as. It seems that people are expecting more from others, and I don't believe it is reasonable in most instances if the situation is logically and fairly evaluated. I also do not feel the same courtesy is being given to the offender by the offended.
For example: You are going through life in a major city. Throughout the day you may act in a way that invites unwanted interaction. You park your car, get out, lock it, then check the door handle three times to make certain it is locked. While walking up to the coffee shop you check your watch. A few seconds later check it again. And then a third time. At one point maybe someone comments, “Why do you keep repeating actions three times?”
If they were to add, “are you crazy or something,” then that would obviously make sense to interpret as someone being insensitive or disparaging towards mental disorders. Even though that would be a fair assumption, it is still not necessarily true. Perhaps the added comment is made out of nervousness and it was an attempt to lighten the mood of the question.
Either way, you cannot deny that the behavior is abnormal. That does not mean there is anything inherently wrong or right about it. It is not what is usually expected, and it stands out. I’m certain many more people notice and note the oddity than those who actually mention it. Humans operate on heuristics.
What does that mean? The best description I found was on Wikipedia. “A heuristic or heuristic technique (problem solving, mental shortcut, rule of thumb) is any approach to problem solving that employs a pragmatic method that is not fully optimized, perfected, or rationalized, but is nevertheless "good enough" as an approximation or attribute substitution. Where finding an optimal solution is impossible or impractical, heuristic methods can be used to speed up the process of finding a satisfactory solution. Heuristics can be mental shortcuts that ease the cognitive load of making a decision.”
What is most likely? After searching online a bit, it seems consistent that most sources report that about 2.3% of the population has OCD. That would mean that about 1 in 40 people may have OCD. What severity and how it may manifest would vary. In a theater of 1,000 people, you would likely have trouble spotting 1 person showing signs as most of us try quite diligently to hide it.
With that in mind, normal behavior would not include the uncommon public manifestation of symptoms. Heuristics tell the observer that the individual before them is acting oddly. There is a 39 in 40, or 97.5% chance that they cannot relate or empathize at all. I would argue that even a smaller percentage would have similar enough experience to relate. Curiosity and inquiry into abnormal behavior is not rare, strange, or inherently offensive.
I’ve heard people say that others “should be aware of these conditions” and therefore be careful to be considerate. That idea is compassionate and seems fine when you’re talking about your child and their one condition. The reality is you are specifically saying everyone should be aware of something that directly affects you individually. Every individual cannot be aware of all the traits, triggers, and indicators of the 297 mental disorders listed in the DSM-5. Where is the line for what is reasonable?
“The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) lists 297 mental disorders. The DSM-5 also includes Z and V codes for other conditions that may be a focus of clinical attention but are not considered disorders.”
- A disorder is typically defined by disruption of daily life.
If you argue not all 297 need to be known, just the most common, then that is poor logic. Say the top 10 people should be aware of. Okay, well how certain are we that those are the most prevalent and not just the most commonly reported, or the most common to seek help? Set that aside as it is impossible to get an exact answer. Okay, well now how do you account for the fact that these disorders manifest in a wide variety of ways in different individuals. Set that aside as impossible and focus on the awareness for the most common traits for the most common mental illnesses. Well, I think that is probably about where we are these days in society.
Is it enough? Well consider this scenario:
A tired woman is riding the bus home at 9pm. She is neurotypical and has no diagnosed disorders, nor the means to treat them if they were found. She just got done working a 12hr shift in an assembly and is using the bus ride home to ruminate about how she’ll pay her bills or feed her kids. Barely even present other than physically.
Suddenly, someone in front of her falls backwards and crashes into her. She stumbles, shrieks, and punches the guy. A friend of the guy who fell starts yelling at her and berating her because he has narcolepsy, and it was an accident. Feeling ashamed and confused, she says nothing. Doesn’t try to defend herself. She's distracted as her heart feels as if it may beat so hard it explodes. She hears her pulse in her ears. The moment is past, why is the anxiety increasing? Lacking the resources or information, she is not even aware she has PTSD as a survivor of sexual assault nor exactly why she was triggered. Therapy and introspection are a large part of an individual even becoming aware of what they are living through.
When that story is retold by the guy who fell, it seems clear to anyone who hears it that he is the victim and suffered due to societies ignorance about narcolepsy. That is not really fair nor accurate though, is it? Given the information as a whole, the only person being inconsiderate of an invisible illness is actually the friend who berates the woman in defense of their friend they felt was wronged. Is that person even really being inconsiderate by jumping to the defense of someone with an invisible illness?
What are reasonable expectations? Heuristics. The most common and most likely answer your brain can shortcut to in the fraction of a second it has to think it through. Is it going to be right all the time? Absolutely not. The problem is that we have limited capability to do much more than that. Often, the best you can do is apologize once given the necessary information to understand.
It is deeper than that, though. Continuing the example with OCD, let’s look at an example that is even more difficult to decode. Anger. I have had times in my life where someone might have done something small like touch my phone and instead of responding in any reasonable manner, I yell at them. What happened internally was a spike in anxiety from OCD due to concern about contamination by them touching my phone. For me, it is usually concern that they have become contaminated by touching my item. Not only does the other person not have that information, but I’m generally hiding it to the best of my ability. I’m certainly not going to explain what just happened. In that example, the emotion expressed is a common emotion that can be drawn out from nearly anything. It seems difficult to believe anyone could do the detective work necessary to accurately figure out what happened. Even if they did guess correctly and asked, I would probably be more embarrassed and lie.
I would argue it is my responsibility, knowing that I have these issues, to seek help and work to reign in both what I suffer and how I express it. I do not think my brain getting irrationally angry is a free pass on my behavior, nor should it be.
2. Moving on to another type of offense. I will stick with the disorder I am most familiar with as I can at least identify the issue independently. An example that comes up often is the use of the OCD acronym as a sort of joke. Shirts that say Obsessive Christmas Disorder, or Obsessive Coffee Disorder. I have OCD and can empathize with the complaints of those offended, but I don't see it as the offense it is often taken as.
Making light of OCD in a general and public way like that is considered insensitive. Insensitive is defined as "showing or feeling no concern for others' feelings." If we think about that definition, I do not believe the accusation fits. I do not believe that anyone who makes or wears a shirt that says Obsessive Coffee Disorder is actively showing no concern. I think they are trying to be humorous, or simply found it humorous. While it is reasonable to say that it comes from a place of ignorance, that is not the same as coming from a place of malice.
The reality is that most people do not understand the disorder or most any disorder that they do not experience. The mainstream understanding of OCD is quite far from the actual mental prison and torture it can be. Personally, I am totally fine with these kinds of things that make light of it because it tells me that the person has no idea that it may even be offensive, or that it can be debilitating. I prefer that because I do not really want most people who know me to know the nightmare going on in my head 24/7 while I try and hold it all together. Why would I not want others to know what I'm going through? At least for my condition, it is simple. They cannot help me, they may judge or misunderstand me, and the odds they could somehow figure out how to navigate the mine field of triggers is pretty low. In my experience, most people get the general idea to the necessary extent by being around me for a little while. Not all reactions are the same, and not all of them are considerate. It is a very flawed assumption to think that knowledge or understanding is anywhere near empathizing. Someone can understand you don't want to be touched, but they cannot feel what you feel internally that makes that the case. Kind hearted people will try to learn and accommodate. Many will just not get it. Some, and this has happened to me, will use it against you. The learned lesson was that my odds of someone knowing what is wrong benefiting me is low, but the risk of what one person could do using it against me is a major deterrent even if the odds are also low. In my mind it feels like there is a 1 in 10 chance it will help me, 1 in 10 chance it will be the worst decision ever, and an 8 in 10 chance I may as well have shared the information with the wall. When I see shirts with Obsessive Christmas Disorder on them, I do not really judge the person or feel offended by them. The thought is much closer to, "I wonder if they would still wear that if they understood?" Also... how do I know that they do not also share the ailment and just try to take life a little lighter as a coping mechanism?
3. “Everyone is a little OCD.”
This does bother me a lot, but I also do not consider it incorrect, and I'll explain. Many disorders seems to be an exacerbation of a normal function of human life and survival. It is seen as a chemical imbalance to the extent that medication seems to become a game of trying to balance delicate scales.
Anxiety is very useful for survival. However, if it is turned up way too high it becomes disordering to life, and at the heart of it OCD is an anxiety disorder. Many behaviors associated with the condition are not abnormal in and of themselves. They only become that way once obsession causes your to overdo it. So, to say "everyone is a little OCD" is not so much incorrect as it is confused. I think it would be more accurate to say, "OCD individuals obsess and express it through common behaviors." This example in particular does cause me to become immediately angry because it feels like something that causes me great distress is being dismissed. As if they are saying, oh we all experience something similar, you're fine. It does not necessarily mean that is what they intend. My reaction is based on my own feelings. How can we expect others to be hyperaware of invisible disabilities, but not also show a similar courtesy in trying to understand what someone else means? How different is it?
Empathy:
"Tis indeed evident, that when we sympathize with the passions and sentiments of others, these movements appear at first in our mind as mere ideas, and are conceiv'd to belong to another person, as we see in the manner, where we never mistake the sentiments of others for our own. But as these ideas acquire force by the reflection of the impression, they proceed to enliven the impression, and are in some measure converted into the very sentiment, of which they are the copy."- David Hume, A Treatise of Human Nature (Book II, Part I, Section XI: "Of the Love of Fame")
David Hume also covers this idea in An Enquiry Concerning Human Understanding. No matter how much we convince ourselves that we can relate and that we know what something is like, the truth is we do not. What would be the frame of reference in your mind to imagine something you have never felt? The closest approximation. The empathy you believe you experience is a mix of what you understood from the information received mixed with your own memories of experiences. That is quite a bold claim. To think that you understood the information correctly, to think the person telling you expressed it accurately based on their understanding of the meaning of words they used, and there were no missed connections there. To believe that your experience of a difficult time is similar or comparable. Additionally, you are merely remembering a shadow of what you experienced. Anyone who has been through loss of a loved one knows it was difficult. You know it lasted quite a while. Do you really believe that the momentary reflection you had was accurate? It caused no response similar to the response from the pain when it occurred. Once, when I was learning to weld, I was knocking off slag and a piece of burning slag bounced up and landed down my collar, on my neck. I remember that it was extremely unpleasant. I know I involuntarily started jumping around. However, I also know that I continued what I was doing a minute or two later. Because of that, if I think about it passing, my brain says, "It wasn't that bad." While you may not have experienced it before, or similar, I would wager that you would consider "it wasn't that bad" as a very inaccurate representation. Well, that happened to me less than a year ago. Can I with any more accuracy tell someone "I know how you feel?" I'm not even sure I know how I feel. Conclusion: So where does that put us in terms of the question at hand? What are reasonable expectations for invisible disabilities? Society has put a lot of emphasis on being accepting of disabilities over the last several decades, and certainly things have come a long way from eugenics and locking people away in mental asylums. That progress should not be overlooked by those suffering from a disorder or disability. While things may not be where you as an individual think they need to be, do not take for granted that no one is trying to euthanize you anymore. Society has made a significant good faith effort, and reading some sub-reddits organized around disorders and awareness, one could think things are worse now than ever before.
I think the reality is that we may be close to the best we can do. I am not referring to those who are malicious, content with ignorance, or unable to get accurate information. I'm talking about only those who are genuinely trying to be compassionate, tolerant, or understanding, and do believe that is a decent segment of the population these days.
Heuristics exist because we are incapable of exceeding the already complex functions that consistently go through our brain. Empathy is our attempt at relating, and the best we can do with the subjective life experience we have had. The amount of knowledge necessary to be entirely "considerate" exceeds the mental capacity of those who spend their life working in the field of mental health.
I think we should all give a bit of grace.
May the same considerations be expected of you that you expect from others.