Bad Feelings Are Not Bad

1671901-poster-1280-3-facebook-status

For a long time, I have subscribed to a basically utilitarian ethics, one that is predicated on harm reduction. When I first started thinking about ethics in any sort of real way, my brain was not in a healthy place, and so I came to the conclusion that if I ever caused harm, what I had done was bad. In particular I never wanted to cause bad feelings in anyone else, especially by bothering them, annoying them, taking up too much of their time, being demanding, or unintentionally stepping on their toes in some fashion. I wanted to take up less space so that I would never inadvertently cause someone to feel bad feelings.

In large part, I attribute this to the fact that my own ability to tolerate distress was complete crap. Nearly every bad feeling I had felt overwhelming, and all I could think about was how much I wanted there to be less of those distressing feelings in the world. I had no idea how to have a “negative” feeling without it ruining my day, and so I assumed that every time I influenced or impacted another person, it meant that they would remember and feel that negativity forever. I was convinced that any time I made a mistake I was actively harming the world around me and making life worse for other people. This very quickly led into a perfectionism predicated on the idea that if I wasn’t perfect then I was seriously hurting people and hurting people in any way was completely unacceptable.

Let’s take a metaphor for a minute (it’s fun, I promise). Say you’re in a crowded room and you bump into someone. You step on their toes a little bit because the crowd was shifting or you lost your balance or you just didn’t quite see them. No big deal. You move and apologize, and for most people that’s the end of it. The person that you stepped on really probably hasn’t had their life impacted in any serious way, and part of being around people is the knowledge that sometimes they’ll be in your bubble. Almost no one in the world would suggest that if there’s a possibility you might step on someone’s toe you should not go out at all. Instead, we take reasonable precautions, like not wearing stilettos in situations where everyone else is barefoot, and trying to keep an eye out around us, and apologizing if we mess up. In terms of quality of life, I would much rather go out and get bumped than stay in for fear of getting bumped.

Most of the time, the little mistakes we make like saying something mildly offensive or accidentally insulting someone are a lot like getting your toes stepped on. It’s annoying and might be mildly painful, but as long as the other person stops and apologizes it really doesn’t matter. Sometimes you have to let people know they’re stepping on your toes (especially if you have sensitive spots that are a little out of the ordinary), and sometimes if you have an especially tender point you have to let someone know that it might look like stepping on toes but for you is jumping on a broken foot (I may be taking this metaphor too far). The point is, most people are more than resilient enough to make it through a few social hiccups without it affecting the overall quality of their life. Even more than that, the benefits of socializing far outweigh the small slip ups that do happen.

This is the secret: bad feelings are not bad. They are not immoral. It is not even immoral to cause them. Sometimes they are entirely healthy, good, and important things to feel, even if they are somewhat unpleasant. Emotions like anger, sadness, frustration, or other so called negative emotions really exist to give us information. Most of the time they’re pretty in tune with what’s happening around us, so if someone violates a boundary, if we lose something we care about, if we cannot reach our goals, or if there’s something else that requires our attention or action, we feel an emotion in response. Good. It’s just like pain letting us know that something is not healthy.

Not all kinds of pain are things that we want to have happen, but some kinds of pain are good and important and necessary. They come from change or trying new things or growing in some fashion. Take a child moving away to college. Both the parent and the child will likely feel some sadness as they are to some extent losing each other. No one would suggest that this is a reason for a child to never leave home. We have these emotions to give us information, but sometimes they give us information we already know or can do nothing about or don’t want to do anything about. So the feeling is just there. And that’s ok. It’s not a bad feeling. It doesn’t ruin someone’s life or even day or week. Just like sometimes I get headaches and that’s annoying, sometimes I get sad and that’s annoying. Sometimes other people are the source of both of those events. In neither case do I think that means whoever caused it is a bad person that I don’t want to be around.

I do still like the idea of minimizing harm, but we also have to recognize that it is impossible to do no harm, and that it’s ok. Other people are more resilient than you might expect. And those moments of sadness or anger? They’re really not all that bad a lot of the time. Negative feelings are an entirely acceptable part of human reality.

Disclaimer: this does not mean that intentionally hurting other people is ok. It also does not mean that feelings that cause serious distress or harm are great and awesome. It means that some negative feelings sometimes are acceptable.

Is “Functioning” A Useful Mental Health Framework?

15744129324_d39b42670c_o

One of the sets of terms that gets thrown around a lot in therapy and psychology circles is high functioning vs. low functioning. I’ve seen it most often when referring to people with autism, but it gets used in many contexts. High functioning individuals with mental illness are usually considered those who can hold down relationships, a job, look presentable, and live independently. Low functioning individuals are defined as those who need help with basic tasks.

There are a lot of problems with this terminology, many of which Leah Harris identifies at Mad in America. It tends to divide people into absolute groups rather than recognizing that people have strengths and weaknesses, it doesn’t allow for change, it can easily set apart high functioning (and not worthy of treatment) from low functioning (and not competent to advocate for themselves or have voices that we hear). More often than not the definition of functioning is related to capitalism: can you work and contribute to a capitalistic society?

“Functioning” terminology does a lot of disservices to people with mental illnesses and leaves a lot of people who have mental illnesses stuck on the outside of conversations about treatment and policy. But it has a pretty strong pull for a lot of people. It makes an intuitive kind of sense. Some people seem to be getting through life better than other people in terms of their relationships, their distress, their overall levels of happiness. Shouldn’t we be able to talk about that? Shouldn’t we be able to talk about the fact that some people need more support than other people?

Yes and no. Functioning can mean a lot of things depending upon what it is the aim is. If the aim is functioning within typical societal structures and capitalistic expectations, then the functioning model is deeply unhelpful. But what might be helpful is understanding that mental illness can deeply impact an individual’s ability to function as they would like. It can keep them from reaching their own goals, or pull them into behaviors that violate their values. One of the framings that DBT provides is the idea of effectiveness: will your action be effective at helping you reach your goals and bringing your life more in line with what you imagine you’d like it to be?

Functioning can run parallel to that in many ways. And this points to a larger problem with how our society conceives of the purpose of people. Society tends to see people as cogs in the larger machine rather than individuals who have different goals and wants. There is no singular good life, which means that there is no single way to function correctly. Even more than that, people are considered to be functional or non functional rather than societies. Individuals are not the only ones who can and should make adjustments to reach a better level of functioning.

Neurodiversity has been positioned as an alternative to the model of functioning by some people, but I don’t think that the two have to be diametrically opposed if we reframe what it is that an individual is functional at. Neurodiversity allows for a variety of paths and goals, and measuring functionality within that framework allows us to talk about how much support an individual might need or how far along a road to recovery they might be without silencing anyone.

I’d like for us to reconsider our aims when it comes to treatment of mental illness. Is it to create people who can fit into the society that we already have without rocking the boat, or is it to help individuals be satisfied with their lives and live in ways that are fulfilling to them? I vote for the latter.

 

Between A Rock and a Hard Place: Triggers

14219428750_0ef70a40e1_k

Yesterday I was hanging out with my partner’s family having lunch and chatting. I generally like Partner’s family, and they’re very kind people. But I’ve only known them for a few months and I haven’t established a very close bond with them yet. That means they’re mostly unaware of my mental illness. It’s not uncommon for people with mental illnesses to be around others that have this level of acquaintance: you know them, you care about what they think, you respect their opinions, and you want the relationship to grow. But they don’t know about your mental illness.

Most of the time that’s totally fine, especially since it’s not too hard to decide that if someone is a total butthead about mental illnesses and runs around spewing stuff like “it’s all in your head” or “just smile more” you can decide that you simply don’t want to invest in the relationship and stop hanging around them. But sometimes you end up in a circumstance in which someone that you want and need to build a relationship with inadvertently starts triggering you.

So yesterday when the conversation turned to calories and weight loss, I really wasn’t sure what to do. These conversations are nearly always triggering to me, to one degree or another. Sometimes I can keep my reaction under control, but usually it means that I’ll spend the next hour to day thinking about calories and weight loss and fighting with myself over my own caloric intake.

What do you do when you’re in a situation in which you can’t disclose your discomfort without outing a whole other pile of things, but you can’t leave without harming a relationship? Are there tools available? Sure I could have set a boundary by just saying “Hey, I really don’t think weight is that important. Could we talk about something else?” or just changing the subject, but when you’re not in a position of power or comfort, that can be extremely difficult. There are all sorts of situations where it’s nearly impossible to set boundaries like that without risking social repercussions.

There are lots of distress tolerance skills that seem really applicable here, things like breathing exercises, soothing oneself with nice sensory experiences (finding the soft blanket in the room and cuddling it), taking a brief mental vacation until the topic of conversation is over, distracting yourself in some fashion (if there are kids around it’s always a good excuse to say you’re just going to go play with them). It’s hard, and it might require limiting time around people you’re not sure you can trust with your mental and emotional health, but as relationships get closer you can start setting clearer boundaries.

The problem in my mind is that it’s still considered socially unacceptable to discuss your mental health in a casual way. It creates situations like these where there will always be unspoken needs because we’re not allowed to speak of mental illness. While physical illnesses aren’t always treated much better, it isn’t considered totally weird or unacceptable to say “hey, can we not have nuts for dinner since I’m deathly allergic and will have a horrible reaction.” It’s considered healthy, logical, and reasonable, rather than oversharing, being demanding, or straining a relationship. For some reason saying “I have the equivalent of a mental allergy to this conversation, can we please stop talking about it?” is awkward and unacceptable, something that opens you up to questions about whether your problems actually exist, or even can lead others to purposefully trigger you.

This might be one of the smaller areas in which mental illness stigma exists. It’s the little times that you have to bite your tongue and just deal with other people metaphorically standing on your feet by discussing triggering or difficult things. But those little moments add up. Each time they happen you have to have an internal dialogue about what you’ll do and how you’ll cope. It uses up important resources. And it normalizes the idea that you don’t deserve to be able to ask for things, even if others aren’t directly sending that message. The unspoken rules of relationships say that until you know each other well, you act polite.

I’m going to try to make a promise to myself that I will attempt to be better at boundary setting, even in situations like these where it’s possible that it will harm the relationship. I don’t have to be rude, mean, or demanding, but letting people know what is harmful to me can go a long way towards normalizing the idea that it’s completely ok to have needs and wants, as well as openly express those needs and wants. It’s even ok to just say that you have a mental illness and invite no further discussion.

This kind of rock and hard place situation doesn’t have to exist. There is no logical reason that disclosing an emotional need should be inappropriate or unwise. So I am going to change something I don’t like by changing my own behavior.

Technical Terms and Language Change

If you’ve been a reader here for any amount of time you probably know that I’m a big proponent of letting language be language. It is a perennial concern of Very Important People that language is changing: words change meanings, new words show up, people start using new constructions, or simple vocal habits and tics change (see: vocal fry). For the most part, I like to remind people that language change is a natural and healthy part of a language. A language that doesn’t change tends to die, and there’s absolutely nothing grammatically improper about creating new ways of speaking, new words, or new definitions for words. Prescriptivist tendencies in language tend to be sexist, racist, and just straight out discriminatory.

But there are a few important exceptions to this belief, and I think it’s important to explain why.

The two most visible examples of language change that rub me the wrong way are “dissociate” used to mean “disassociate” and the slide of “trigger” from a very specific psychological term into a general term for anything that upsets someone. Both dissociate and trigger are words that were coined within psychiatric circles to describe symptoms of mental illnesses. They’re both fairly technical terms with specific definitions that are used in psychological studies, papers, diagnoses, and treatments.

There’s already a lot of confusion and misinformation that surrounds mental illnesses, especially around what different diagnoses and symptoms mean, how in control someone is, and how serious symptoms are. Most people misunderstand what the term trigger means when it’s used in a psychological context and use that lack of understanding to discount how serious it is to be triggered. Very few people have any idea what dissociation is or how serious it can be. Because of these larger public perception issues around diagnosis and understanding, it is extremely hard for people who have these symptoms (as well as disorder that have come into common parlance but aren’t truly understood) to get compassion, accommodations, or help when they’re struggling. One of the ways that people who have mental illnesses are doing activism is by trying to educate others about these terms so that if someone says to you “I think I’m dissociating right now, can you bring me something soft to touch,” you won’t think they’re making no sense and you’ll be able to help them out.

That might not seem like it’s hugely important for someone who doesn’t have these symptoms, but for a person who deals with them, it can be the difference between serious backsliding or competent coping skills.

So when people start using these terms to mean only partially related things, it doesn’t seem to me that it’s basic language change. It seems that it’s a misunderstanding of what certain diseases are and a breakdown in education. In these cases, using the language in a different way does actively harm people. It’s similar to using OCD to mean neat. While most people can understand what you mean, it’s the kind of language change that relies on a stereotyped image of a diagnosis to get its meaning, something that makes it harder for the people who actually have the diagnosis to explain what their lives are like.

In many ways, there are parallels to humor here. It certainly is possible for any subject to be funny, but a good rule of thumb is to punch up, to make fun at the person with power in a given situation. Similarly all words have the ability to change, but in general it seems like a good idea to be tolerant of changes that don’t hurt anyone or are specific to an oppressed group, while resisting changes that rely on punching down at a group.

Of course it’s not entirely possible to just stop language from changing, but what we can do is continue to inform people of the definitions that we use and that are used within communities of mental health, and ask that others do the same to stop confusion. We can continue to educate people about what mental illnesses are actually like. And one way to do that is to stop using trigger to mean “annoying thing” or dissociate to mean “move away from”.

In Defense of Graham Moore

22-graham-moore.w1200.h630

The Oscars were this weekend, which I conveniently forgot and missed until Monday morning’s storm of response articles and videos. Patricia Arquette aside (that’s a whole different ballgame), one of the most noted acceptance speeches was from Graham Moore, the writer of The Imitation Game.

Moore seemed to draw a line between the struggles that Alan Turing faced and his own struggles as a teen, saying

“When I was 16 years old, I tried to kill myself because I felt weird, and I felt different, and I felt like I did not belong. And now I’m standing here, and so I would like for this moment to be for that kid out there who feels like she’s weird or she’s different or she doesn’t fit in anywhere. Yes, you do. I promise you do. You do. Stay weird. Stay different. And then when it’s your turn and you are standing on this stage, please pass the same message to the next person who comes along.”

It seemed to echo many of the It Gets Better speeches from gay celebs. Except of course that Moore isn’t gay. And so there has been a minor media frenzy to point out that being weird and being gay are not the same thing (thanks to the Brigade of Obvious for that one).

New York-based writer Kevin Joffré said “Being gay means more than ‘being weird.’ It means living as if you owe people an explanation for your feelings and your life. Your loved ones can be the biggest burdens in your life. You can be actively otherized every day of your life. That’s what being gay means.”

Meanwhile Guy Branum, a gay comedian and writer added: “The primary purpose of the gay rights movement is to make it OK for straight white guys to talk about how they got picked on in high school”

Slate posted an entire article explaining that Moore’s speech is indicative of a larger cultural way of thinking that equates being gay with any other sort of difficult life experience like bullying or feeling awkward in high school. But the way that all of these people are talking about Moore’s speech seems very off to me. Take the way Slate described his youthful experiences: “Moore…revealed that his own vague adolescent weirdness and concomitant difficulties led him to the precipice of suicide when he was 16.” Wait…vague adolescent weirdness? That seems to imply that what Moore experienced is the average teenage angst that happens to nearly everyone in high school.

The problem with all of these people saying that Moore’s experience was not predicated on structural oppression seem to be missing the ridiculously large elephant in the room: Moore has depression. He did not just come to the brink of suicide. He made an actual suicide attempt.

“I grappled with very severe depression when I was young, but I would also say this is something that has not gone away,” Moore said in an interview after the speech. “This is something I’ve had to deal with every single day of my life. It’s something that a lot of people deal with but not a lot of people talk about publicly.”

While Moore didn’t mention his depression in his speech (which I might chalk up to the obvious anxiety he was feeling), the world as a whole should be able to figure it out: over 90% of the people who commit suicide have a mental illness. An awards show obviously isn’t the place to get into the nitty gritty of his depression, so the quick and shallow explanation he gave of feeling “weird” seems to be a gesture towards his clearly more serious depression.

So here’s where this gets complicated: is being depressed the same as being gay? No, of course not. Are both of them axes of oppression? Yes, of course. Are both extremely difficult experiences that have some similarities, especially when you’re a young person who feels as if there’s no end to the struggles? Probably. So is it useful to bring them up in the same speech? Umm…maybe?

We know that it doesn’t help to equate or compare different kinds of oppressions in some kind of weird Oppression Olympics or “gay is the new civil rights” (sorry civil rights is the new civil rights). While Slate might imply that the bullying Moore (or other straight, mentally ill kids) faced was just the cool kid in math class, not the whole of society, what that misses is that having a mental illness is not some teenage phase. It’s possible that some people with mental illnesses don’t face structural oppression (although as a whole they do), but the constant torture of living with a brain that is driving you to suicide is a very real kind of oppression, even if it comes from your own brain. Just as much as you can’t stop other people from tormenting you, you can’t turn off depression.

I don’t know that there’s a good point to be made here, because bringing up a different oppression as a parallel to being gay or being black or being female doesn’t always make sense and isn’t always helpful, but sometimes it can provide a bridge between two communities. Was an Oscar acceptance speech about a movie starring a gay man the best place to talk about depression? Probably not, but at the same time people use their Oscar acceptance speeches for really random shit, so at least Moore made some attempt to be topical.

But please, whatever you do when discussing this speech, do not erase mental illness. It happens too much already. Don’t equate depression and suicide attempts with average high school difficulties. The conversation we need to be having is not whether being weird and gay are useful parallels, but whether mental illness and sexual orientation are useful parallels.

Integrated Sports

wnba_g_moore01jr_600x400

I’ve recently become a fan of pro basketball, something that I never in my life thought would happen. I watch it often with my boyfriend and a couple of our other friends (all male). And more often than not, I’m struck and annoyed by the casual sexism that comes across in the reporting, who gets to report, the cheerleaders and dancers, and of course the fact that the league is still exclusively men (MenBA) while the WNBA is discounted (often by the same people I watch basketball with, who in many other areas are big proponents of gender egalitarianism).

So it isn’t unheard of for me to opine that we should integrate genders in sports. We have trans and intersex people who are trying to compete, amazing female athletes who do beat male athletes in a variety of sports (equestrian events are integrated and women win medals regularly, Billie Jean King beat out Bobby Riggs in tennis, many of the top rock climbers in the world are women and top distance runners are often women), and the current system tends to devalue women’s sports and create an extremely unhealthy environment for men who participate in sports (see: the NFL’s horrific record on domestic abuse).

The problem is of course that we do have statistical data showing that in many of the most popular sports, the elite men have a significant advantage over the elite women. In the NBA for example, height is such a high predictor of success that almost 17% of all men over 7 feet tall are in the NBA (this is so ridiculous I can’t even process it, as the league as a whole is one of the smallest professional sports leagues, with only 15 members per team). The tallest woman in the world today measures in at 7 ft 3 inches, whereas the tallest man is over 8 ft, with the next few trailing in the inches behind them, making it far less likely that women will physically be able to compete against the taller men.

There are many similar examples, like upper body strength in swimming, or weight in football. And unfortunately, most of the extremely popular sports are those that trend male: football, baseball, basketball, hockey, and soccer all skew towards the male body type, whereas some sports that are geared towards women’s strengths, like ski jumping, open water swimming, gymnastics, figure skating, and shooting are not advertised, supported, or seen as important in the same way that male sports are. While there’s no surefire way to change the attitudes of people towards these sports, media coverage of them would go a long way towards showing people that they are actually interesting (also note that gymnastics and figure skating get huge numbers of views during the Olympics when they are broadcast widely).

There’s some good evidence that the cultures that make up male dominated sports are harmful both to the people who engage in them and the people who interact with them, pushing men to view women as objects and socialize exclusively with other men, giving them a skewed idea of what women are like and what they’re capable of. That means there’s good reason to consider integrating sports, especially as the sports that are integrated (for example cheerleading) show good evidence of being healthier for everyone involved and bestowing benefits like teamwork, understanding, and respect for women’s leadership abilities. So why don’t we integrate sports, and if we do, how should we go about doing it?

The first and most obvious way to integrate would be to simply have one league in which everyone plays, potentially with an A and B league so that we get the same number of athletes playing and so that we get the same set of less powerful athletes playing at the B league (something that many people find more interesting for the different styles of play it encourages).

The problem with that is that in the most popular sports the A league would de facto be predominantly male even if it wasn’t in a de jure fashion. It might even lead to less women in sports if there are events that are so skewed towards male bodies that men would make up the entirety of the A and B leagues. Ok, bad solution.

Another possibly more helpful way to integrate by gender but keep the playing field relatively even would be weight classes. Of course this won’t work for every sport, but it would be a start and could be instituted in sports where weight is a significant factor. For something like the NBA there could even be height limitations in some leagues. Or consider leagues that are mixed genders and require a certain number of men and women on the playing field at any given time. Even competition, but probably a slightly different game than the basketball we see now.

It also seems entirely possible that there could be leagues with slightly altered rules to make women more competitive. Some people might whine and moan about how this would destroy the sport, but all our rules are completely arbitrary anyway and the way we set up our competitions is completely arbitrary, so why not make it more accessible to women? I know you all love dunks, but imagine a league in which dunks weren’t legal and how that would change the playing field for gender equality. Ok MenBA fans, stop throwing things, you can still have a dunking league too if you want.

Of course a lot of the work when it comes to gender integration of sports is going to be convincing fans that women are both athletic and interesting to watch. It’s convincing people that sheer power is not the most interesting athletic attribute (or at least not always). It might even be shifting the massive amount of time and effort that certain leagues put into maintaining a masculine image towards one that’s more inclusive and accepting of people who don’t just want to commit exclusively to sports and only sports all the time by proving that they’re men, manly men, the manliest men.

There are so many interwoven cultural signifiers that take up residence within our conceptions of sports, both in the way they’re coached and presented to boys and men, as well as the way they’re consumed (typically by men and in coded male settings). Simply changing the rules to integrate women isn’t going to convince people to value different athletic traits and abilities or new ways that the games might develop if women were integrated. Too many people will simply see it as artificially lowering the playing field because they value power and sheer strength over balance, flexibility, finesse, or skill.

So even if we could find a great way to integrate sports, there’s probably a lot of work at retraining our brains and societal expectations to appreciate new things.

tl;dr I don’t see gender equality in sports happening any time in the near future.

 

Who Gets To Define Sick?

11187516605_411303a168_b

Disability activism is an area in which I often suck. I’ve only just started to dip my toes into reading work about disability and theories of neurodivergence and so on. Which means that I’m still on the fence about a lot of stuff and thus this post will be fairly speculative (and quite possibly overly 101). Most particularly the thing that I want to focus on today is technology and the way that new technologies interact with disability and illness, especially the ways that we define disability and illness.

For a long time, things like blindness and deafness were not the kinds of things that we debated on whether they were good or bad. We couldn’t change them and so for the most part services for those people were about simply helping them get by in their environments with the skills that they had (when it was decent. Sometimes it just turned into locking them away. That is definitely not good). However with the advent of certain new technologies, we may have the ability to reverse some of these conditions. Cochlear implants are a great example. Deaf individuals can choose to use technology in order to hear as most other people do.

But with the ability to make the change comes the question of whether or not we want to make the change. For many deaf individuals the answer is no. They see deaf as an identity and don’t feel as if they cannot manage in the world as they are. Some deaf people say that cochlear implants are a way of telling deaf people that they’re wrong or less than. If the default position of society and the medical establishment is that you need technology to change a fundamental fact about yourself, it’s certainly easy to see how someone might get the impression that the message being sent is “you need to be fixed.”

On the flip side, there’s really no question that as society today stands, it is easier to be a hearing person than a deaf person. Especially when a baby is born deaf (particularly to hearing parents) and the parents have to decide whether or not to give the child a cochlear implant, most people assume that it would be cruel not to give the child that leg up. Most people speak a verbal language rather than a signed language, most schools and jobs are set up for hearing individuals, technology often relies on sounds. There are some clear benefits to being able to hear.

Let’s change the script a little bit. There are clear benefits to being white in society as it stands today. White people are far more likely to hold high paying or powerful jobs, get promoted, get hired, get good grades. The dialects that are common to African Americans are devalued while standard white dialects are held up as normal and correct. Being black is just harder than being white.

While most people would agree with the second script (and if you don’t then you need to brush up on your racial politics), almost no one would suggest that the solution is to just make black people white. Similarly, many of the reasons that being deaf is hard in society isn’t because there’s something wrong with deaf people but because society is just set up around the needs and abilities of hearing people. We could easily say that life would be easier if we all had more legs (because more is better right?) but the way things are set up now wouldn’t work for those people. There’s nothing inherently better about having doors the size they are or schools set up to teach through vocalizations, it’s just what’s common and works for a lot of people.

The autistic community is a great example of this kind of reframing. The more we learn about autism the more we find out that autism itself doesn’t actually cause very many problems. It’s far more likely that interacting with a society that has different expectations is what causes the problems. When people with autism are met where they are, they’re astoundingly talented and functional (for example when they’re communicated with in clear and literal ways, when they’re allowed to learn while moving or standing, or when they’re given weighted blankets or clothes to help them with sensory sensitivities). The problem comes when everyone assumes that people should all function the same way. It’s actually not that hard to adjust and help meet someone’s needs.

Now to contrast these basic disability 101 concepts let’s look at something that is pretty clearly a problem: eating disorders (I know, I’m repetitive). There are many people with eating disorders who don’t want to go to treatment, take meds, eat food, have therapy, etc. It is a hallmark of eating disorders that people who have them don’t want to get better. And yet we can very clearly point towards the fact that eating disorders are harmful, they can kill you, and when people do recover they tend to see that it was really not in their best interest to resist treatment.

There are some clear differences here: there is no society in which having an eating disorder would make your life easier or better, whereas it’s absolutely possible to have an autistic or deaf community where those conditions are normal and great. But there are other things that live in between these two examples, and with the advent of medical technologies that might be able to cure them, how do we decide what counts as an illness, disease, or disability, and what is simply a difference? Who gets to make those choices? In a wholly hypothetical world, if we could ensure that a child is born hearing, seeing, mentally sound, etc. are we morally obligated to ensure these things because they’re “better”?

At the moment, the medical establishment, whether that be through the DSM, Big Pharma, or doctors, makes most of these decisions. It’s probably good that doctors are involved in the definitions of disease and disability, but what’s really missing is the internal perspectives of the people we define as disabled. There is a lack of respect for the rights of individuals even in cases in which they are clearly harming themselves by not seeking treatment (such as eating disorders, where people are often pressured or bullied into treatment). More than anything, the assumption that a condition has to mean the same thing to every person is a huge problem. Not every deaf person will experience their deafness as an identity they care about, but not everyone experiences it as a hindrance either.

I seriously doubt there will be a clear answer of where to draw the line between “totally acceptable and not a problem difference” and “thing we really should work to change.” But what I worry about is that going forward technology will put more and more power in the hands of government, pharmaceutical companies, and doctors instead of individuals to promote certain treatments. I hope we don’t walk blindly towards it.