Awareness vs. Acceptance: We Do Need Both

It’s almost April, which means it’s almost Autism Awareness Month, which means it’s almost the time of year where Autism Speaks becomes even more insufferable and awful than they are the rest of the year and a lot of advocates try to combat the Speaks messaging with messaging of their own. I’m all for reminding people that Speaks is not the only or even one of the better autism organizations, and for giving people concrete facts about what Speaks has done to harm people with autism.

But one thing that has been grating on me is that I see the message “we need acceptance not awareness” all over the place during April. I get it. We do need acceptance. There are lots of organizations that use the guise of “awareness” to peddle really harmful BS.  Autistic people really do need the same respect, autonomy, and fulfillment as anyone else, and nothing else will improve their lives as quickly. These are great goals and I fully support them. But a lot of Autistics and their families say that people are already aware of autism, so we don’t need awareness anymore.

I strongly disagree.

Personally I’m a big fan of the word “and”. We need acceptance AND we need awareness.

When I came out to my parents as autistic, they almost laughed at me in disbelief because they had a very different picture in their mind of what autism was (think more Rain Man, less me), and were not aware of how it can present differently in women. I still hear stories of people getting misdiagnosed because their therapist didn’t think women could have autism.

When I talk to friends, they still use “autistic” to mean socially awkward or obsessive, but they have never heard of many of the other traits of autism, nor do they understand the whole “spectrum” concept.

When I explain that people on the spectrum can have sensory sensitivities, I often am met with confusion or surprise. I’m still seen as picky or high strung because I cannot eat certain foods without a gag reflex. People are confused when you call perfumes and scents an access issue.

Sure, people know that autism exists, and might have a vague understanding of what it is, but many, many people don’t understand how it actually affects people. I tend to run in circles that are pretty up on psychological information, and even my circles are full of people who require a lot of 101 explanations of how their behaviors can make my life hard or how to do basic accessibility or even what autism can look like.

Awareness is not simply awareness that autism exists: it’s awareness of what autism is and why autistics behave in the ways they do and what the current issues are in the autism community. Of course we can’t educate every person on every nuance of autism, but that doesn’t mean we can’t give most people a solid foundation of understanding that will help them be more accepting.

Because I have a secret about human behavior for you: people will not accept your behavior unless they understand it. Acceptance relies on awareness. People are way more likely to accept your differences if they have some understanding of why you do what you do and have at least some ability to predict your behavior (does this sound familiar autism community? Do we sometimes find it hard to accept things that we don’t understand or that are sprung on us without prep time? Can we start implementing universal access in our own lives by walking allistic people step by step through what to expect?)

Now sure, it would be way better if we could all just accept each other’s differences without question, but that’s not how humans work. Some people can make that happen with a lot of work (in DBT we call it the skill Radical Acceptance), but acceptance is much easier with an explanation. We don’t just need to be aware of the existence of autism, but of the reasons it might push someone to behave in what we view as incomprehensible ways. We need to make autism comprehensible to others.

So no, I’m not done educating or increasing awareness. I want people to be aware of sensory sensitivities and what it means to be nonverbal, I want people to be aware of meltdowns from the internal perspective, I want people to be aware of what a fidget is and why someone might use it, I want someone to be aware of how their language and communication style might be alienating someone. And THEN I want them to accept all these differences. But I don’t think we’re done with step one yet. So I will still advocate for increased awareness, because I have experienced the ignorance of many folks when it comes to autism.

As a final note, none of this means that we have to do awareness before we can do acceptance. I think we should be working on both all the time. I am all for criticizing awareness done poorly. If you’re spreading misinformation (Jenny McCarthy…Autism Speaks…looking at you), then I’d rather you shut your mouth than try to help. But criticizing the whole idea of awareness? That doesn’t make sense. I want people to understand my life. I am always for more education.

The Pros and Cons of Dichotomies

We as human beings like to sort things. It makes things easier, allows us to make quicker decisions to keep ourselves safe, and is generally just useful in a lot of ways. Unfortunately, because of our brain’s quick abilities to sort things, we often like to create dichotomies. We see this explore in a lot of feminist theory (Man is to Culture as Woman is to Nature by Sherry Ortner) when we see dichotomies lumped together: feminine is emotional is irrational is the body is nature is…and on and on and on. We see emotions and logic set at odds with each other, because we like to categorize things as one or the other.

 

Unfortunately for us, the world does not exist in neat categories and dichotomies. Oftentimes we have to hold conflicting ideas together in our minds and belief systems: I can be doing my best and still have to work harder. I can be emotional but still make a good decision. There are lots of dichotomies like this. Oftentimes, I see people who haven’t had a lot of experience with mental health trying to categorize things into good and bad: they list traits of successful people or successful relationships, they talk about what makes a person happy or sad, they talk about how to be healthy. Often this involves juxtaposing these supposedly good traits against their negatives.

 

I recently saw a post on facebook about successful vs. non-successful people. Successful people’s traits included things like “making to-do lists”, “complimenting others”, and “exuding joy”. Unsuccessful people “criticize”, “lie about keeping a journal”, and “don’t know what they want to be”. This is bad dichotomizing. It shames people for things that may not be under their control, and creates categories of things that may not go together: so for example, I am very good at setting goals, making to do lists, taking responsibility for my failures, and recognizing the success of others. However I also don’t exude joy, I don’t know what I want to be, I’m bad at setting goals, and I do a number of other things from the “bad” side. We can’t label people as one or the other: we’re all mixed bags. And the trick isn’t to make yourself everything on the “good” side, it’s to balance your traits so that YOU can be successful: some of the “good” traits are useful, others are not. This depends on individual propensities.

 

Dichotomies can be used in helpful and unhelpful ways. They can be really unhelpful when they’re simply unrealistic. This happens a lot when we’re talking about gender, or about race, or about sexuality, or any other large human characteristic that people like to pain with broad brushstrokes. We just get it wrong when we try to encompass everyone in a dichotomy. It erases those people who don’t fit, either by telling them that they don’t exist or by telling them that they shouldn’t exist (see: genderqueer individuals and bisexual individuals for good examples). This often makes people feel guilty or ashamed when they don’t fall neatly into the category they’re “supposed” to be in. These kinds of dichotomies try to force things into one category or another, but really just make a situation more confusing by obscuring what’s going on.

 

However there are times that dichotomies can be pretty great. Sometimes you need shorthand to come to a quick understanding of a situation: you’re not necessarily looking for nuance, and you need to know yes or no, white or black. This is often helpful in emergency situations, or situations where you need to act quickly and don’t have time to explain carefully. But I think there’s another really important area where dichotomies can be extremely helpful, one that doesn’t get talked about much. This has to do with dialectics. I’m currently in a therapy called Dialectical Behavior Therapy, and one of the underlying principles of this therapy is that we often live in situations that have a dialectic between two mutually opposing forces in our lives. So for instance I can at once be doing my best and have to do better. These two things contradict each other, but they can both be true. And for me to survive as a human being, I have to hold the dichotomy together as a dialectic.

 

For some people this is more true than for others, but I find that dichotomies are everywhere in my life: in order to gain back control of my life, I have to give up control to therapists and dieticians. In order to be more stable and safer, I have to make myself vulnerable to others. These are bizarre dichotomies, but if we are to move forward in our lives we have to recognize them and accept them. These are personal dichotomies, about understanding the relationships of certain things in our lives, rather than about categorizing outside things and people. And where these dichotomies become very helpful is when we can understand that the tension between them is not destructive, but creative. When I recognize that my eating disorder is both a method for me to take up less space and to assert myself into space, I can do some amazing things with trying to fulfill both of those functions in new places, and with trying to understand those needs creatively through writing and art. Tension drives us to try to understand, and when we need to understand we build things around us: narratives, art, symbols, concepts, systems. If we can make these things dialectical instead of oppositional, we can do a lot for ourselves.

How Do We Talk About Eating Disorders?

I’m currently working on a post for Teen Skepchick about eating disorders in a cross cultural perspective. At the moment, I’m just in the research stage of this post, so I’m reading a lot about the research that’s been done about cross cultural eating disorders and about the differences in symptoms, causes, and etiology of eating disorders in different cultures.

And I have to say that I am deeply upset by the way we talk about eating disorders. I am particularly upset because I’ve been reading academic articles, pieces by graduate students studying psychology, and other articles that are surveys of the literature on eating disorders. These should be held to the best standards we have. Unfortunately, no matter where I look (except for in very particular blogs written by people with eating disorders, particularly Science of Eating Disorders), I hear the same things over and over and over again:

“When we expose our girls to thin models and beauty ideals they develop eating disorders”

“Girls of African American descent aren’t likely to get an eating disorder because their culture values voluptuous bodies”

“Eating disorders only crop up in other countries as they become infiltrated by Western beauty ideals”

I am SO sick of the conversation around eating disorders being dominated by conversations about models and images of women in the media and the desire to be thinner. It cannot be that difficult for people to understand this, but I’ll say it again: an eating disorder is a mental illness. It is not a diet. It is not even an extreme diet. It is not a desire to lose weight. It is a coping mechanism to deal with difficult things in your life that you can’t cope with otherwise.

There is VERY little evidence that eating disorders are caused by skinny models. What there IS evidence of is that eating disorders are caused by low self-esteem, family disruption, trauma, other mental illnesses (depression, anxiety, OCD, BPD, bipolar, and addiction are common), abuse, or other difficult situations that you need a way out of. It is such a cliche by now that eating disorders aren’t about food, but I cannot stress it enough: eating disorders aren’t about food! They aren’t about looking pretty or beautiful. I have YET to meet someone with an eating disorder who says they just want to be pretty. I hear them say that they’re depressed, that they can’t cope, that they’re lonely, that they don’t feel acceptable when they’ve eaten, that they feel out of control around food, or that they use food to numb out emotions and manage other parts of their lives.

It is not helpful to keep refocusing the conversation on how someone’s body looks and the beauty ideals. This continues to reinforce them as what’s important, and it focuses the issues on the body again, instead of addressing whatever mental stress has occurred. It simplifies the matter to a point that is unhelpful, and makes treatment and self-understanding very difficult because it doesn’t allow us to reach the real etiology of the disease. It even reinforces those negative suggestions that a woman’s worth is in the beauty standards she does or does not strive to live up to.

Instead of these things, it would be far more helpful to talk about the sexism that makes women feel inadequate no matter what they do, or the bad family systems that don’t allow for good communication or healthy emotions, or the abusive relationships that many women are in, or the trauma and depression of daily life, or the failure of our mental health system to provide us with good coping techniques for when we do start to feel over our heads. If we want to talk about cross cultural eating disorders, maybe we should talk about the different family roles that exist, the different expectations of women in different cultures, the common mental illnesses in those cultures, the differences in guilt and shame in different culture (these feelings are huge in eating disorders), and the relationship that these cultures have to food as symbolic, relational, or positive.

Eating disorders are mental illnesses. They are not an attempt to be skinny. They are not a reaction to the media. They are not the desire to look like a model. They are serious. They are life-threatening. They are painful. They come with depression, constant mental stress, trauma, self-hatred, difficulty with relationships, isolation, loneliness, feelings of guilt and inadequacy, and all sorts of things that ARE NOT simply reactions to the media, but are about how we relate to ourselves and how we relate to others. Can we please start talking about them in terms of the mental situation of the individual suffering, because that is what makes something a mental illness?

Staying Calm in a Debate

I’m having a rough day today. I’ve gotten in a number of heated arguments on facebook. These are not my favorite forum. I have a hard time disconnecting, and a hard time not getting emotional about things that mean a lot to me. Like the fact that sexism and racism are institutional things, not individual actions (dumbasses. Figure it out. Calling someone a dick is not the same as years of disenfranchisement, discrimination, beating, and abuse). I’m upset right now because people are playing on my emotions purposefully, while I have always tried to argue in all good faith. I don’t appreciate when people try to fuck with me just to make a point.

So I’ve gotten a bit emotional. I’m shaky. I can barely type straight because my hands are shaking. I don’t like it when people purposefully push me this far.

But I also think it’s important to try to come to some understanding of whatever a debate is about. I like closure. I did actually get to some points of understanding between myself and the people who were not agreeing with me. So despite being really upset, I don’t want to simply walk away from situations that upset me. I know that part of my inability to walk away is that I want to win. I want a conclusion. And I know that others want that too. I should stop. I really really should. It’s not accomplishing anything when I get upset. And it’s not accomplishing anything for me to “feed the trolls” as it were.

So how do I continue to advocate for my own position, defend myself, and stay calm? How do I continue to respect people (which is something I’ve been trying REALLY REALLY hard to do–Shawn, I really hope you feel I have, that’s always been my intent), while also respecting myself and bringing up controversial and critical points from the position of a minority group (either women or atheists?) How do I also listen to other people’s experiences and respect those?

I really don’t know. I think that I may be too sensitive to really engage in a lot of online debate. I think that every individual who wants to engage in activism needs to take a hard look at their own personality and decide what level of vitriol and anger they can take from others before deciding how far they want to engage in debate.

I’m starting to recognize that many times the greatest form of activism is taking care of myself and respecting myself. But oftentimes I don’t feel like that’s enough. I want to be able to pave the way for other people who are like myself have the space to express their opinions and their selves.

So what do you do when you get upset in online debates? I often find that talking to someone else and making sure I’m not crazy (because people love to gaslight me) helps a lot. I also find that having sources to back me up is really helpful so that I don’t have to do as much of the speaking myself. It helps to stay calm when I engage with something else at the same time as I am engaging in a debate, or if I self-soothe at the same time (pictures of kittens are good). What do you guys do to help calm yourself down in a debate? How do you deal with it when you become upset or frustrated? How do you continue to engage in activism or in debate when your fight or flight instincts start kicking in?

Staying calm is really important in my mind. I was spending some time defending the place of mockery in the atheist movement. I do believe that it’s ok to mock certain beliefs (transubstantiation anyone?) but I think there’s a time and a place for it. My family and I had a Holy Saturday celebration this past week in which we made pope hats to be silly about the new pope (some of us also chose pope names and dressed up in Argentinian garb). This was a private celebration that didn’t attack anyone, but did mock a bit of the ritual in the Catholic church. I think it was fine because it was a bonding activity, and it was highly enjoyable for us. When I’m trying to present myself as the face of an activist group or trying to understand another person’s beliefs or explain my own, I don’t find it helpful to use mockery (some people can do this to great effect. I personally don’t like it).

And so when I’m trying to engage in a discourse (which is different from personal and private enjoyment, or simply throwing something out there), I don’t want to get upset, get angry, personally attack people (which I never think is ok), or lose objectivity and clarity of thought. I want to be able to understand my emotions, use them as fuel for my arguments, but not necessarily let them skew my arguments: make sure that each of my arguments fits the facts, and proceed from the facts as best I can. It’s difficult because I exist in a realm of social justice understanding that many other people don’t inhabit. It’s hard to have to try to explain all of the assumptions that I come in with that I have spent a great deal of time thinking about and coming to conclusions about. It’s frustrating when people dismiss those assumptions despite the fact that I have read pages and pages about them. It’s hard to sum all of that up in a few sentences. It’s hard not to get frustrated when people bypass all of the thoughts that are going on in your brain, or assume that you haven’t already thought things through.

If and when I have time, I would like to start a series that addresses some of these assumptions that I hold: these include things like intersectionality, the nature of racism and sexism, how language changes, privilege and power, and other things. I suppose I could have linked to my privilege post already, but I’d like to have a ready set of them to send to people to give the background of my thought processes. Let me know what things you have a hard time explaining to others, and I’ll see if I can provide a cache of basic explanations of a number of social justice concepts that often get misunderstood or subject to ridicule.

In the meantime, I’m going to try to stay out of facebook debates, because it’s started to get triggering to me and I’ve begun to dissociate when they happen because I feel like I need to quash my emotions and that is really unhealthy for me. If people work purposefully to get me upset and I have to force myself to not react to direct attacks, that’s not healthy. It’s not the kind of activism I want to engage. I’m allowed to be angry about oppression that affects me.