A Change In Perspective

It’s been a bit of a rough week here in Olivialand. I’ve had some ups and downs in my family life, and a friend that I care a great deal about has had an incredibly bad week. The good thing about having these two events happen at the same time is that I was treated to opposing sides of the mental health talk: that of the person suffering, and that of the person who wants to help. Because of this kind of parallel, I’ve had a chance to gain some insight about the people who have tried to help me, and I think that the conversation between the perspectives can be beneficial for both sides.

One of the things that’s always been hard for me while dealing with treatment and my mental illness is having sympathy for my friends and family, particularly when they become scared and will do just about anything to change my behavior. There have absolutely been times when people close to me have acted inappropriately out of fear, most often in attempts to keep me safe. They’ve done things that hurt me, scare me, and feel overly controlling.

For quite some time I’ve felt resentment about this. I’ve felt like I have to be the one who manages everyone else and that I can’t be open with people because then I’ll have to deal with their fallout and freakout. I’m sure anyone who’s dealt with mental illness has had these feelings before, because no support person comes ready made with a  perfect knowledge of how to support you, and that means sometimes they step in it. Lately in particular I’ve been feeling as if my family wants to control me and keep me close to them so they can keep tabs on my behavior and I’ve been a bit frustrated with it.

However this week has put me on the other side of the spectrum. I have felt the utter helplessness, the desire to just grab the person who is suffering and hold them, the need to make things better. I’ve been part of discussions that desperately try to find some way to ask the other person to listen, to change, to grow. I’ve seen how someone I love and care for is not acting like themself, is lashing out and being cruel, is seeing everything anyone says as negative. It’s so frustrating to see how someone is falling apart and not be able to show them all the ways they’re being self-destructive and all the ways you know they could fix it. There’s this certainty that if they just did what you told them, you would make it better.

Of course that’s not actually true, and probably my solution would be to see a therapist which is a whole bucketfull of hit or miss and really hard work by itself. What is true is that when one is spiraling out of control in depression or anxiety or any other mental illness, it might be a good idea to trust your support crew for a while because they’re likely thinking a little more clearly than you are. What’s also true is that your support crew is not at their best because they’re terrified and they really want you to trust them for a while, so they may resort to bad tactics.

High emotion situations mean that no one is acting at their best. In the situation, it’s easy to always see how the other person is behaving badly rather than take into account the ways that you yourself are not acting the most rational. Experiencing both at the same time made me realize how I was getting frustrated with others for doing the exact same things that I do when I’m put into their same situation. And when you’re already stressed out and frustrated it becomes infinitely harder to cut others slack. Of course this is the most important time to do it.

What I’ve learned most about this situation is that while it’s ok to be frustrated or hurt by someone else’s actions, getting angry and retaliating is the worst possible response. Cutting some slack, recognizing that people are being motivated by fear, trying to see that it’s not actually about you, and then calmly setting boundaries is probably the best response (although like any ideal it’s nearly impossible). In reality, I will probably do my best to balance the anger that I feel when someone violates my boundaries with my understanding that they do so from fear.

When someone is spiraling and they lash out at those trying to help, I will remember what it feels like to have my coping  mechanisms yanked out from under me, to be confronted with the sort of person that I’m being, to have people tell me that I’m not being a very good version of myself. I will remember how much that hurts.

When someone I love starts to hold on a bit too tight, I’ll remember the panicked feeling that there’s got to be some guarantee that will make your loved one safe, that they need to get better, that they can’t see how bad it is. I’ll remember all the words and scripts that flooded my mind when I saw someone hurting themself. I’ll remember how nothing I say seems like the right thing, but that I know I can’t just sit back and do nothing.

There are no good solutions to a mental health scare. But I’m making a commitment to try to do better by the people around me by having more patience.

An Open Letter to a Struggling Friend

Hey you.

It looks like things aren’t going so well right now. In fact it looks like things suck balls right now. It looks like you’re terrified and hurting, and you don’t know how to let people help without giving up who you are and all your coping mechanisms.

Trust me, I understand. I understand what it’s like to know, deep down in your gut, that what you’re doing is right and that everyone else should piss right off because they don’t get it. I understand what it’s like to know that you can’t get through a day without doing those things that everyone else says are “bad” and “dangerous” and “self-destructive”, but you know that you wouldn’t even be alive right now if you couldn’t use them to cope.

I also know what it feels like to not want to be alive anymore. I don’t have any trite words of wisdom about how it gets better. Some days I’m still not convinced that I make the right decision by choosing life over and over again. Life is exhausting and thankless, and seems to be a hamster wheel of attempts at happiness. I don’t know what we get out of it, and I don’t know whether it’s worth it. What I do know is that I care about not hurting people, about being a compassionate, decent human being. I know you do too. And I know for a fact that hurting yourself will hurt many, many other people. Not a small, insignificant hurt either. The kind of hurt that lasts and lingers and comes out of nowhere when you least expect it.

You know that kind of hurt.

I know it comes across as unfair and guilting when other people ask you to be healthy for their sake. They don’t know how hard it is. You’re not doing anything to them. You have the right to your own life, and they need to get over it. You’re doing what you need to do to get by, so screw everyone else who wants to change that. Why is it your responsibility to take care of everyone else’s god damned emotions?

It isn’t fair. In no way is it fair. However it is also the reality of the situation that your actions affect others, and if you want to be consistent with your values you have to start taking care of yourself. You also have to start listening. I know that you are a strong, brazen individual who doesn’t give a fuck…except that you do. You give so many fucks and that’s why it hurts so bad when others are hurting. That’s why you have to poke and poke at the people who want to hurt you, that’s why you want to prove you’re stronger than it all, that’s why you want to look stone-faced. It couldn’t possibly get any worse, could it? Maybe it will get bad enough this time that you won’t have to keep going, you’ll be able to give up.

That doesn’t work. I have tried nearly every trick in the book to turn off the feelings. They keep coming back. Always.

And you and I have something in common that means you will never give up. We have a special kind of stubborn streak. You may be the only other person I’ve met who has one quite like mine. It’s the kind of stubborn streak that means we never leave things half-assed, including our own lives. Oftentimes it leads to problems. But this is one of those times where the stubborn can be used to your benefit. You will hold on to your bad patterns with the strength of Superman, but you will also hold on to life because change is terrifying and you’re used to being alive. Relish that stubbornness. Relish the fact that you’ll survive just to prove that you fucking can and you’ll be fine without any help thanks very much.

Except of course that you won’t be fine without any help.

There are people who are telling you that they love you and that they want to help. That’s not what you want to hear. You want to hear that they’ll leave you alone because you don’t even know what help looks like and you don’t know how things could possibly get any better (because they always seem to find a way to get worse). Somehow it doesn’t hit that these people really might have a perspective that you can learn from. How on earth would they know better than you about your life? They think they care about you and they think they love you, but if they knew who you really were they wouldn’t? They’re lying, it’s a trap, it’s a trick, they’re condescending fucks.

Or that’s what you tell yourself.

In reality, you cannot understand how terrified and in love your friends are. You will never understand what you mean to them. You will never understand how badly it hurts them when you lash out, when you tell them that you know they hate you. You think that you have to be the one to manage them all, to keep them in line. You have to come up with the magic bullet that will fix all your problems and they’ll stand there and smile nicely and maybe lend a hand, but they don’t know what’s going on and so they can’t help.

Except that each of your friends has an entire lifetime of coping behind them. The feeling of finally being able to fall into their arms and give it all up is amazing. They might not know exactly what to do, but a little bit of trust goes a long way: they probably know how to help a lot better than you think they do. They are willing to put up with so much more than you think they are.

Imagine, briefly, that one of us was far away and hurting. Imagine that we were cutting off contact, instigating fights, hurting ourself. Imagine what you would do to get to us, to save us, to make god damn certain that we were ok. Imagine how badly you would want to fold us in your arms and get us to a doctor and shut out the rest of the stupid world until we were safe.

And I get that it feels like we want to control you, and I get that it feels like you’re a damned adult and you can handle yourself, and I get that this all feels like a stupid overreaction and you don’t want it. But you know what being an adult means? It means taking responsibility for your relationships. It means being willing to do shit that is hard and terrifying and unpleasant. It means being willing to talk to your friends and listen when they say they’re worried and do silly, potentially useless things to help calm their fears.

Because really, how would it hurt to let them in? Besides the overwhelming fear of rejection (which you’ve already forced by pushing them away), what would happen? You’d have to stop doing all the things that rip your body apart and leave you broken but in control (or so you tell yourself). You’d have to stop holding so damn tightly to all the little things in your life that are making you feel human.

So yeah, it does hurt to let them in. And maybe some of them won’t be able to handle it. And that is a horrible, miserable feeling. But I can promise you that if you don’t let your friends in, none of them will be able to handle it and you’ll be really, truly alone. I can promise that you KNOW it hurts right now. It may very well get worse if you ask for help and you do the damned hard work of learning new ways to cope. In fact it probably will. For a while. It is a thankless task. But when you hear your friends and family saying things like “I never could have said this to you a year ago”, or you notice how much more relaxed they are around you, or how you haven’t felt like you have to hide or lie in weeks…somehow it’s a little bit worth it.

I’m not going to tell you it will all get better. There are no rainbows and unicorns. But you can get better. You can do better. And I expect better of you. I know that you’re hurting, but that doesn’t give you license to treat your friends the way you have. So please, stand up and be the version of yourself that is vulnerable, open, and compassionate, to yourself and to others.

I love you more than you can imagine.

Olivia

The Role of Exercise in Eating Disorder Recovery

For people with depression, anxiety, or really any form of mental illness, a common refrain from well-meaning friends and acquaintances is often “well just exercise. That will help you feel better”. It’s true that there is good evidence that regular exercise can improve mental health (although there are many problems with simply prescribing exercise). However trying to incorporate exercise into a recovery and treatment regime becomes infinitely more complex in the context of an eating disorder. Over exercise is often a symptom of eating disorders, and for many people trying to recover it’s also a trigger for other self-destructive behaviors.

Because exercise is an important element both in healthy weight maintenance and improving mental health, but is also a triggering and potentially dangerous activity for someone with a history of overexercise, people in treatment for eating disorders must walk a delicate tight rope when it comes to their exercise regimes. This has been a particular struggle for me, and I’ve been looking for ways to bring exercise into my treatment in a positive fashion.

There are a few techniques that I’ve had some success with, but if anyone has more suggestions, please share in the comments. The first way that I’ve found to improve my relationship with exercise is to stop using the word exercise to refer to movement. This opens the way for all kinds of “exercise” that don’t involve going to the gym and using equipment that loudly announces your calories burned to you every time you look down. I swing dance and I rock climb and sometimes I just throw dance parties in my room and sometimes I try to just go for walks or have squirt gun fights with my friends. The more that I can find things that I enjoy which also happen peripherally to involve movement, the better.

The reason I try to use this technique is because the moment my brain is convinced that I am “exercising”, it becomes convinced that I need to hit certain markers of acceptability: burn a certain number of calories, exercise for a certain period of time, stick to a certain regime. If I don’t use the label “exercise” to describe what I’m doing, but rather focus on “fun activity, preferably with friends”, I get a lot more mileage out of the activity and don’t fall into a negative spiral that tells me I am not acceptably fit. Looking for activities that fit this mold also lets me double dip on my activities: not only do I exercise but I also find some depression fighting positive activities, and potentially social time as well.

Something else that has worked well for me is to accept that sometimes a complete break from exercise is necessary. I find exercise extremely helpful with anxiety and don’t like leaving it entirely behind (especially as I’ve been pretty active my whole life). However when I’m compulsively exercising every day, it can be much harder to try to slowly lower the amount of exercise that I’m doing while still doing some. In many ways it’s easier to simply say that I can’t be responsible about my exercising at this moment in time and I need to take some time off. This has the added benefit of giving me LOTS of extra time to do other positive things with my day.

There are a lot of ways that cutting exercise out of  your life for a time can backfire. How do you deal with all the anxiety you worked off before? How do you accept loss of muscle mass or increase in fat? How and when do you begin to add exercise back in without swinging immediately into over exercise mode again? Especially if you’re doing this while you’re trying to increase your caloric intake, it can take a serious toll on your emotions and your motivation to continue treatment. Unfortunately, this is one of those places I don’t have the answers: I’m struggling to find ways to begin incorporating exercise again without it becoming unhealthy.

One helpful way to deal with feeling guilty about not exercising or feeling extremely compelled to started exercising again is to find some friends who aren’t big on exercise. This doesn’t mean you have to dump your friends who are extremely fit, but there are people out there who aren’t particularly interested in physical fitness and are perfectly happy with their lives. I am a big proponent of distract until you’re in a healthier place, and finding people who will encourage you to do other types of fun and interesting things, model other versions of healthiness and happiness, and generally not bring up exercise as something you have to do is a great way to build a life that doesn’t circulate around exercise.

The final, and perhaps most difficult thing to do if you’re working on overexercise is to make sure that you’re not paying any money for exercise. What I mean by that is if you’re paying for a gym membership or classes or a personal trainer: stop. I’ve found that when I’m shelling out money I feel obligated to “get my money’s worth”. You can always go to the local rec center and swim some laps or go for a run or a bike ride. But those ongoing expenses are a constant pressure to get to the gym and make it worth it and I’ve found that pressure nearly unbearable.

Of course all of these are just suggestions that I have found helpful, and won’t work for everyone. I’d love to hear other suggestions in comments, especially from those who have found an exercise regime that works for them.

Sensations and Confusion

Most people would not describe me as a sensual person. I think I come across as fairly cold, definitely stand-0ffish, and distinctly touch repulsed. I’m not a hugger, I’m pretty lukewarm on cuddling, and I really like having a large personal bubble (which no one gets to be in unless I explicitly invite them in). I’m a picky eater, like soft and comfortable clothes, and am uncomfortable with looking and acting sexy.

But oddly enough, this stand-offishness is actually because I am incredibly sensual. I’m ridiculously sensitive (if you try to tickle me I will likely elbow you in the groin. Unintentionally). Sometimes I feel sensuality so hard that it hurts. When my cats are being particularly adorable I get the desire to cuddle them so hard that my jaw starts aching and I get shakey shivers through my spine. Sometimes I have to grind my teeth or bite down on something to keep myself from pulling a Lennie. (Don’t worry my kitties aren’t in danger, I just love them a lot and sometimes have to restrain myself).

Scents can change my mood completely. Petrichor will immediately make me nostalgic and full of feelings I can’t quite put my finger on: infinity I suppose. Some scents are home, and others are fear. The smell of a certain deodorant will always be my first boyfriend and will always be violation. Lilacs are childhood, and spaghetti is safety.

And sounds. Sounds are amazing. The sound of someone chewing will make me more violent than anything else in the world. But music can make me feel things I can’t explain, powerful, sexy, beautiful, deep, broken, joyful, empty…music and dance and rhythm speak to me on a level that nothing else does. I will remember the words to a song after just a few repetitions, I will learn the muscle memory of movement better than anyone I’ve met.

Touch is too much for me. I get shivers from someone brushing against my ankle or my wrist. Soft socks can change a whole day for me. Anything less than a slap is a tickle. I can feel your breath on my neck and it makes me wriggle and squirm. I once got off just from the feeling of someone touching my back.

Don’t even get me started on food. I can’t put anything with the slightest hint of bitter into my mouth and I crave sugar like no one I’ve ever met. Once a taste is in my mind I can’t shake it until I eat, and eat, and eat. I once wanted cream cheese wantons for a full year. No matter how many times I ate them, the need never left. Textures can ruin any meal for me. Trying to eat tofu is a practice in attempting not to vomit. I would rather not eat than eat something mushy or gooey or gelatinous.

I crave sensations. Perhaps self harm is an attempt to get a high, a thrill, a sensation. Sometimes when I see a picture of a beautiful person I feel a longing so hard it hurts. Perhaps that’s why I thought I was a sexual being for so long. I WANT so much. But when I stop and think about it, I don’t WANT kisses or sex or anything of that nature. I want to stare for longer, I want to possess the spark of beauty that’s in the face, I want to rub my face on the soft skin just like I do with my cat’s fur. I want to grab ahold of things and squeeze and contain. I crave beauty, I crave speed, I crave movement. I feel the same thrill on a roller coaster as I do whirling on the dance floor as I do looking at the face of that gorgeous movie star.

And it’s confusing. It’s confusing how much I want. I have so much, but sometimes the spaces that I have close in and I feel like I need to run outside and rub my face all that the world is. Sometimes I am afraid that because of what I have chosen today I won’t be able to fall in love over and over with all the things I can experience. The fear makes me nauseous.

How can I contain the feelings, how can I identify, how do I have any grounding when each new experience gives me a whirling high that confounds me? My own emotions are too much to keep me in one place, one person, one body. I can’t contain myself. I wonder sometimes if I love too much because my body refuses to cut out the excess, colors are too bright and tastes are too sharp. People think that minds are separate from bodies, but how can I keep my emotions stable when my body feels so much? How can I not feel so much when the world is full and intense and soft and more than my senses can process?

The longing I feel will always confuse me. I don’t know if I will ever be content.

Hierarchies of Eating Disorders: A Spiritual Perspective

If you’re someone who reads lots about eating disorders, you’ve probably already seen this article by Maree Burns floating around recently. For those who aren’t enmeshed in the world of post-structuralist and feminist critiques of eating disorders, you may want to try to read it anyway. It’s a little long and at times jargon-y, but it’s also fascinating and makes important points about the hierarchies we set up around eating disorders. Similar to Burns, I will not be using this post to posit anything about the actual nature of eating disorders, but rather about how they’re constructed in the common conscience of Western society.

There are many points in Burns’ article that I’ve spent time grappling with: the fact that anorexia is both held up as perfect control and derided as sickness and disgusting, the way anorexia and bulimia can be mapped onto the virgin/whore dichotomy, and the tendency to view anorexia as the ideal eating disorder. There is an hierarchy of eating disorders, one that is held up by nearly everyone. Anorexia is considered cleaner, more respectable. Many people even view many of its characteristics as positive, but simply taken too far. On the other hand, bulimia is considered disgusting, animalistic, and out of control.

Burns looks at this hierarchy from the perspective of post-structuralism. I’d like to take a different perspective that I think can illuminate some other elements of the hierarchy and the ways that eating disorders make a certain kind of sense. Spirituality is something that Burns does not touch on at all in her article, despite the fact that moral language runs rampant in descriptions of eating disorders, and in the past eating disorders often happened in religious contexts.

Throughout her article, Burns draws on the Western concepts of dualism. She looks at it particularly from a feminist lens, in which female is associate with body/disorder/evil/animal, and male is associated with mind/rationality/control/order. However there is a slightly different version of this dualism that may actually shed more light on eating disorders, which is the body/soul split. Burns points out that society (including pop culture, psychological professionals, and those who actually have eating disorders) makes negative judgments of only certain elements of eating disorders. This includes the behaviors of bulimia (especially purging) and the skeletal body of someone with anorexia.

She posits that these are different types of judgment: the judgment of bulimia is about actions that don’t fit into the appropriate feminine mold, while the judgment of anorexia is about a body that makes a mockery of the thin ideal.  She looks to how each of these “negatives” deviates from acceptable feminine roles and how that deviation results in judgment. In contrast, the behaviors that make up anorexia (self-denial and self-control) are often viewed positively as movements from feminine (bodily) to masculine (rational).

However there is another way to interpret the negative judgments we cast on those with eating disorders and the ambiguous position of anorexia in society. We can find a clue in the religious language used by starving saints in past centuries and co-opted by some people with anorexia today (including myself). Oftentimes this language circulates around dismissing the body completely and moving into a fully spiritual realm. The prioritizing of the next world over this one still holds sway in Western culture (despite frequent cries about our society falling into horrible materialism).

These criticisms of eating disorders reveal that bodies, particularly bodies that remind us that we are animal, mortal, and fallible, are what receives criticism. Negative judgments of bulimia often center around the corruptness of the body and through the body, the individual. The body is seen as the ruler in this situation, but the focus on the body is often given a moral meaning. People with bulimia binge, however the binging on food is often extended into other realms: they’re posited to be kleptomaniacs, sex addicts, or out of control. Most of these assumptions focus on impurity and the fact that binging and purging “taints” the individual. I’ve often heard them referred to as “failed anorexics”. This means that they have failed at the purity that those with anorexia achieve because they allow their body and its needs to overtake them. The obsession with “how much did you eat” and “how did you throw it up” reveal society’s dark obsession with the animalistic elements of bulimia and how it affects the body, rather than an interest in the inner lives of those with bulimia.

Burns suggests that the negative judgments of bulimia are made in contrast to the self-control (often interpreted as rationality) of anorexia. She says: “Self-starving is also paradoxically privileged as a signifier of those qualities that have historically been associated with ‘masculinity’, such as self-control, persistence, transcendence of the (labile feminine) body, and strength” However I would argue that this type of self-control is often associated with spirituality rather than any kind of rationality, as she suggests. People recognize the irrationality of anorexia in the context of the material world. However starvation, asceticism, and self-denial have a long history in the religious tradition of transcending this whole plane of existence.

Something that I’ve posited for quite some time is that the end goal of anorexia is to become pure spirit, to no longer be held up by worldly, finite things.This is why anorexia is often held above bulimia. However the reality is that people with anorexia do have bodies and their actions do impact their bodies. When their bodies begin to appear abnormal, we’re reminded again that they are human, finite, and mortal and that their bodies are falling apart. We are reminded of death (see: focus on the “skeletal” nature of the anorexic figure). And especially as Western societies move closer to secularism, this reminder of death is viewed as disgusting and disturbing, garnering criticism. The combination of heavenly motivation with dying body creates the mixed reaction of most individuals.

This additionally explains the feminine coding of anorexia. It falls in line with the tradition of women who fade away into martyrdom and make their femininity acceptable by rejecting their bodies unequivocally. It is part of the “pure” woman, the history of women as keepers of the spiritual well-being of their families, of women as more moral and in touch with religion than men. Part of the push/pull response to anorexia is the fact that the very deadliness and extremity of it is considered admirable by some. Not everyone can do it: it refuses to accept human limitations and so in some ways appears almost supernatural. The extreme refusal of finitude almost appears to be a martyrdom, especially for those who are trapped within the eating disorder. There’s even a kind of cultish interest in the fact that many people with anorexia suffer from ammenorrhea. Their bodies no longer even produce blood, one of the most obvious markers of human finitude.

On the flip side, bulimia reminds us of our more animal side. We think of the behaviors not as outstanding or amazing, but as mundane and slightly disgusting. We associate overeating with animals, with bodies, and we view vomit as wholly animal (because bodily fluids are gross ya know?). It’s very easy to view the dichotomy between bulimia and anorexia as a struggle between our lower natures and our higher spiritual calling.

And of course if we are considering female morality and spirituality, sex must be play a role. The connections between food and sexuality have already been identified, particularly in Burns’ article. Abstinence is a largely spiritually driven quest. Few secular people feel the need to be abstinent for moral reasons (of course there are some, but it’s not nearly as common as within religious circles). The drift of the spiritual meaning of sexuality into food also colors our conceptions of eating disorders. Just as the body is dirtied and corrupted by inappropriate or out of context sex, so it is by inappropriate or out of context food: a binge. An important part of this connection is the way that sexuality is used to dehumanize, animalize, and objectify women. When we use phrases like “orgies of eating” to describe a binge, we sexualize not only the food, but also the individual participating, and through that sexualization we objectify. It portrays people with bulimia as less human, as more animal. The objectification of women through hypersexualization plays directly into the ways that anorexia (anti-sexual) is viewed as humanizing, pure, and spiritual while bulimia is viewed as animalistic: those who engage in it are objectified just as others who are hypersexualized are.

While the role of male/female dichotomies plays an important role in eating disorders, we should also consider the dichotomy of worldly/heavenly and how that can explain some of the behaviors and attitudes we have towards eating disorders. The history of eating disorders (particularly the long history of female saints starving themselves to death) is a good place to start in this perspective.

Infinite

There’s a scene in The Perks of Being a Wallflower in which Charlie and his friends are driving their truck through a tunnel. They stand up in the back while their favorite song plays on the radio. Charlie says “In that moment, I swear we were infinite”.

Sometimes, when I’m walking down an empty street at night and the wind is warm and my skirt is swirling around my legs, I wonder if I am infinite. Unnameable feelings rise in my throat, as if my self were too big for my body and might burst out somehow. As if I could walk to heaven if I just pointed myself in a direction and started going. As if I might be able to see the whole world if I climbed high enough.

In the first season of the rebooted Dr. Who, Rose Tyler looks into the heart of the TARDIS and becomes infinite: she knows everything. Unfortunately, she simply can’t contain it: if it remains inside her it will kill her. No human being can process that much information.

More often than not, I feel like Rose, burning up from the inside with all the bits and pieces that flit through my mind. I jump from one task to the next, my brain racing with answers and analyses and concepts that don’t quite process fully.

I wonder whether I can ever hold on to the infinity, or whether my body will burn up. I want to breathe in the whole world through the pure taste of summer. God smells like lilacs and lily of the valley. The angel choirs are singing 90’s music. In heaven, I dance like Baby from Dirty Dancing.

But my body doesn’t move like that and lilacs die in a week and the 90’s are over. Every night when I fall asleep I remember that I am finite. Sometimes I pretend I can subsist on air to convince myself that I’m god-like enough to hold onto the joy of nights that sing and smirk and dance. Sometimes my whole body deflates and I collapse into myself when the hot air I puff myself full of gives out.

How could I not be melancholy when I have glimpsed perfection and fallen away?

Consent and Neurodivergence

Consent is at the heart of sexual ethics for many feminists and other progressive individuals. There’s talk of enthusiastic consent, and impaired consent, and power dynamics, and all sorts of things that might impair someone’s ability to consent. Those who promote consent can come down pretty hard on someone who has violated another’s consent (with good reason). More often than not, these conversations seem to give the message that consent is simple and anyone can figure it out. People can read body language, so clearly we can all tell when someone is not interested.

Unfortunately, what this type of attitude obscures is that for many people, consent is not easy or simple. Conversations that look to have some sympathy for those who are more than simply “socially awkward” but are neurodivergent get shut down as rape apologism. Some people repeat over and over that we can’t have any tolerance for those who violate consent, that nothing is an excuse, that we need to get serious about consent. And yes, it’s true that we can’t excuse bad behavior based on neurodivergence, but navigating consent and body language when you’re neurodivergent is simply different and far more difficult than doing so when you’re neurotypical and it’s time we talked about it.

For individuals who understand body language with relative ease and can communicate well, consent is just as easy as navigating any other social interaction. For those with autism or other forms of neurodivergence, it just doesn’t always make sense. There are two important sides to this question: one is those who have a mental illness that leaves them with cripplingly low self-esteem or other problems that mean they feel incapable of saying no. The other is those who need things to be phrased in a literal, clear way in order to understand them and who subsequently hurt the people they care for but don’t understand why or how.

Let’s start with the first. I have more experience here and I believe that these questions are a little more clear cut. The concept of consent assumes that all parties understand what they want and are comfortable with, and have the confidence to express those wants and needs. Unfortunately, many people (women in particular) have been conditioned to repress their desires, to hide them. It’s no secret that low self-esteem is a serious problem for many women. When someone doesn’t have a mental illness it’s hard enough to internalize the ideas of consent and to be open about what you’d like. Sometimes even learning to use your body language is difficult.

But what about those of us with mental illnesses? Say those who have learned that their emotions are always wrong and must be shut down, or that they can’t trust their emotions? What about those who dissociate and simply stop doing much when they become uncomfortable? What about those who have pathological fears of abandonment? We may be fully convinced of the importance of consent and still feel incapable of standing up for ourselves or expressing our wants and needs and boundaries because somewhere in the back of our mind there is a terrifying tape playing over and over that tells us we must follow the script or we will be alone forever. When an individual feels pressured to consent simply because their mind requires them to appease others, or they’ve got an unrealistic image of what might drive away their partner, consent becomes complicated.

To some extent, I question whether individuals who feel so enmeshed in a disease are capable of consent. If someone is incapable of seeing a situation realistically, can they ever be properly informed? I say this as someone who has been in these situations, thought that they were consenting, and realized later that I felt there was no other option. I am unsure whether anything can be considered consent if there is no possibility of saying no.

This is not to say that the mentally ill should never be allowed to have sex, but rather that consent is far more complex when one has to fight against a mental illness to get a clear picture of what one is consenting to and what the consequences of saying no are. It means that both parties who are consenting need to be fully aware of the situation. I also hope that the partner who is not mentally ill would take extra care to ensure that their partner knows they’re allowed to say no and will be valued regardless of sexual activity. In addition, I’m not suggesting that someone who is mentally ill is responsible for recovering or overcoming their mental illness in order to prevent sexual assault. That’s victim blaming nonsense. I am suggesting that they should be aware that their mental illness might obscure what they actually want and need, and that there should be an active and open conversation with partners (or at the very least with oneself and trusted support people) to determine what you actually want and need, and how to obtain it.

This points towards the fact that we can say someone did something wrong (misinterpreted the cues of consent and did something without another’s consent) without deciding that the individual is a horrible, miserable excuse for a human being. Thanks to my own choices to obscure my desire and boundaries, I have had partners violate them without being aware that they had done so. Often these were people who deeply loved me and wanted to never hurt me. I have begun to label their actions as inappropriate without then needing to decide that they were bad, hurtful people.

So what about the other side, those who may try to value and respect consent but find it difficult to identify when it’s present or absent? Consent is even muddier when someone has difficulty with reading body language or difficulty understanding social cues or difficulty when requests aren’t phrased in a completely literal fashion. If, for example, if someone has autism. I know that many people like to pretend that those with disabilities, including mental disabilities have no sex life, but that’s patently false. I personally have experienced some of the pitfalls of trying to navigate consent with an individual who has difficulty with social boundaries and social cues. This puts the partner in a difficult situation: how do you respect someone’s needs as a neurodivergent individual while still asserting your own boundaries?

I have never experienced it from the other side, but I’m sure it’s just as frustrating trying to understand how and why you appear to be hurting your partner. If you don’t understand that certain eye movements or body movements mean “no”, it can be extremely confusing to realize that your partner was trying to tell you no all along and you continued to push. You likely will blame yourself, right along with the other person, for something you have no control over: your ability or inability to read body language.

Particularly difficult is the fact that the community often has zero tolerance: if someone screws up one time they are officially a rapist and cannot be trusted. For those with autism, this means that they might misinterpret something and then lose much of their support system, even if they want to change, fix, or improve themselves so that it doesn’t happen again. Few people will take the time to adjust their communication habits, explain ways to read body language, or give the neurodivergent individual new tools to make sure things are better next time.

Part of the frustration here is that we don’t entirely know how to put the label “hurtful” or “unacceptable” on something without then imputing blame on the person who did it. We don’t know how to validate that someone is a survivor or was traumatized while also working to give positive options to the person who hurt them. While most rapists probably don’t need helpful hints about how not to rape, it’s straight out ableist to assume that the sex education that neurotypical people receive (which isn’t even sufficient for them) will be enough to help someone who is neurodivergent navigate the extremely tricky waters of sex.

Perhaps some of this is about the EXTREME need to find new scripts: I know that many autistic people work from scripts because that’s easiest for them. The scripts we have right now that surround sexuality suck. Providing new scripts might be the more useful way to take on these cases rather than shaming and cutting those people out of our lives. If we don’t create any new scripts, people will continue to behave in the same way. If we take the time to help them with a new script, they may have healthier relationships in future. This probably means putting more emphasis on verbal consent and making it ok to ask things like “do you like this?” or “do you want me to keep going?”

None of this is to say that neurodivergence is an excuse for sexual assault or harassment. I have seen people say “I’m autistic so it didn’t count” when told their behavior was unacceptable. That is deeply screwed up: you can still rape someone if you’re autistic. When someone does not show a strong desire to rectify what they’ve done, then by all means, blame away. These criticisms are pointed towards those who would vilify an autistic individual who deeply wants to make amends and improve their behavior for the future.

The important distinction here is excuse vs. explain. Explanations may be a plea for help to fix the root cause of a problem, while excuses seek to push away the responsibility. Different explanations for the same behavior require different actions to fix the problem. In the case of the neurodivergent, I wish there were more sympathy, more help, and more ways for the offender to demonstrate that they can learn and grow. Part of teaching consent is teaching people ways to say “no” and ways to navigate their relationship in a way that works for them. I am all for consent-based sexuality, but consent can’t be from one perspective. We need to open our movement up to those people for whom our current definition of consent isn’t working and doesn’t make sense.

I don’t necessarily have answers for how to balance these types of situations or how to improve them, but they are conversations that need to happen, and we need to recognize that one person’s version of consent may not work for everyone.