Trauma is Not What Makes us Autistic

I’d like to start this post by noting that while I mention ABA and the controversy over ABA, I hope that folks don’t focus exclusively on that as the point of this post.

There’s something that’s been festering in the back of my mind for a long time, a discontent with the autistic self advocacy community, a feeling that I do not belong there and that I cannot relate to many of the concerns of other autistics. I’ve never been able to put my finger on why I don’t feel quite right before. Until just this moment, when I saw a title of a talk that posited Trauma is an essential part of Autistic Identity.

And there it was. There was what I was missing. The bullying, the ABA, the mockery…when I read posts from other self advocates or talk to them in person, I find that they focus in a big way on traumatic experiences, often experiences in which they felt deeply othered by parents, peers, or teachers. Their way of being was seen as bad, and that is what has led to their advocacy.

Now I want to be very clear: talking about histories of trauma is important. Recognizing shared traumas is important. However what concerns me is making trauma a marker of identity. Trauma is not what makes us autistic. It is not an intrinsic part of being autistic. Ideally it’s something that we wouldn’t have to live with. And I have seen it used as a gatekeeping mechanism that says “if you don’t claim trauma as part of your history, you don’t get to talk about autism. You don’t get to talk about ABA. You must let the Real Autistics talk.”

In other areas I’ve seen suffering become a way to gatekeep. You’re not really queer if you’re not oppressed. You’re not really black if you can pass. In the asexual community, there have been discussions of whether we “count” as queer/LGBTQ because we haven’t experienced the same oppression that gay, trans, lesbian, or bi folks have. I’ve had little patience for it in other places, and in this case I finally feel as if I’m part of the “insiders” and can speak up without speaking over.

Maybe I don’t have to say this, but it absolutely is damaging when someone gets cut out of a community because they haven’t experienced “enough” oppression. It reminds me of people with eating disorders who believe they don’t deserve help because they aren’t “sick enough”. Everyone deserves to feel as if they are part of a community, and even if compared to other people in your community you’ve had a relatively easy go of it, you still deserve the support of knowing you’re not alone. All autistics experience ableism. Whether we have had a history of abuse or not, we all need a place to go that is understanding and welcoming. We all need to be able to talk about our experiences.

But beyond damaging the people who get cut out of the community or told that they need to shut up about their experiences, I think it does a disservice to people who are entangling their basic identity with trauma. I say this as someone who has a very deep relationship with mental illness and trauma, someone who knows what it’s like to be massively affected by negative experiences, and to feel that my identity has been altered at a basic level by the negative experiences I’ve had. But I firmly believe that entangling your basic identity with trauma limits your potential to actually move on and grow. It limits your ability to add other elements to your identity.

That sounds abstract. But when I was in the very deepest parts of my mental illness I rarely thought of myself as anything but anorexic. If someone asked me who I was or what I did or about myself, my first thought was “anorexic”. It was the default identity I had, and when I wasn’t sure about something, I would typically take the perspective of anorexic to understand it. That limited my ability to assimilate new information, it meant that when things challenged a perspective forged in pain, I discarded that new information. If trauma is always at the forefront of your mind, that is the lens through which you view the world. You see everything as a threat. It often means that if someone disagrees with you, you label them immediately as “source of trauma”. That does a lot of damage to you because you don’t get to see new perspectives, hear new information, and grow. You’re completely stuck with your brain still processing trauma over and over again.

Now all of this isn’t to say “oh it’s super easy to stop existing in a place of trauma”. That shit takes hard work. But right now what I’m seeing is that “trauma” as an identity and a perspective is being glorified among autistic self advocates. And it’s sad to me, because that is where I see the root of a lot of anger, fear, and confusion. If you’re not a part of the autism community right now, you may not know that there is some serious beef between parents of autistic kids/providers/teachers and autistic adults. I think there’s good reason for some of this beef, but in many cases you end up with people who have the same goal yelling at each other and feeling attacked. I’m concerned that the mindset of trauma is leading to it.

For example, many autistic adults experienced abuse in the form of “treatment” in their childhood. ABA has been and often still is incredibly abusive. As a response to those experiences, some autistic adults now say that all neurotypical parents of autistic children are abusive and all ABA is abusive. Let’s focus particularly on the first one, because I think it’s a more obvious example of what I’m talking about. I think most of us can find easy counterexamples to the statement “all NT parents of autistic children are abusive”. That’s an all or nothing statement that allows for no nuance and not only is fairly aggressive, but also shuts down and silences experiences of autistics who lived a different life. It says that a few people’s trauma is the final word on an issue.

And it concerns me because I have seen folks use their history of trauma to tell other autistics to shut up and sit down. I have seen the community condone that behavior and focus almost exclusively on trauma in a way that says these all or nothing, black and white statements are not only ok, but they’re important and necessary. There is no attempt to move beyond the hurt that was experienced, but rather a valorizing of those who have experienced trauma and a deference to every word they say.

Just because you have an experience doesn’t mean it’s true for everyone. And just because you are autistic and have experienced trauma does not mean people are not allowed to disagree with you. There is nothing bold and brave about holding tight to your pain and ignoring all new information. And as autistics, we should do better. We should know that we need to work on nuanced thinking because we tend towards black and white. We should know that we can struggle with theory of mind, and so we should work particularly hard to understand experiences (especially those of other autistics) that are different from our own. And if another autistic comes forward and says “hey, this wasn’t abusive for me”, we shouldn’t accuse them of lying or ostracize them. We’re losing valuable information about the breadth of experiences within autism.

There is no benefit to holding up a bar that says “you must be this traumatized to enter autistic spaces”. We can and should do better.

Weekly Action Scripts February 7

Welcome to your weekly scripts! Last time I gave scripts for calling and tweeting elected officials about various issues related to disabilities. This week let’s talk immigration. This one will not be quite as long as last week’s as there aren’t quite as many issues immediately on the table right now, but I promise there will be more.

The biggest issue on the table at the moment is the travel ban that came through an executive order from President Trump. There’s not a whole lot that legislators can do about this one, as it’s an executive order, but this is a good time to bombard Trump’s social media and phone lines to make it as clear as possible that we do not condone an act that seems to be motivated by blatant racism and fearmongering.

In my previous post I outlined the best ways to contact the White House, as the comment line is no longer open. Make sure you check that out if you’re planning to make calls. Here are some basic scripts for contacting President Trump to urge him to end this ban.

Twitter: @realDonaldTrump your immigration ban does nothing to improve safety and hurts people who need help. END IT.

Phone call script:

Hello, I am calling in regards to the travel ban that President Trump has put on people from seven Middle Eastern countries. I am calling because as an American citizen, I believe that this ban is inappropriate, cruel, and not in the best interests of the American people. Immigrants already go through a heavy screening process, and it is inappropriate to leave refugees with nowhere to go. This ban does not make America any safer, but it has broken apart families, left many people in confusion about whether it affects them, and sent a clear message that America is not friendly to people of different nationalities and religions. I urge President Trump to reverse the ban. Thank you.

The second issue I’d recommend making yourself heard on is the wall on the Mexican border (it feels like a goddamn post apocalyptic caricature to even type that).

Twitter: @realdonaldtrump Mexico will not pay for a wall. Immigrants should be welcome in America, and this wall puts people in real danger. NO WALL.

Phone call script:

Hello, I am calling in regards to President Trump’s proposal to build a wall on the Mexican border. I am calling to urge President Trump to reconsider, as this will be exorbitantly expensive, ineffective, and does not represent the attitudes of the American people. We should welcome those who come to us for a better life. Please do not move forward with this wall. Thank you.

As always, feel free to adjust these scripts to suit your needs. I had a friend turn last week’s into postcards, which was fantastic! If you have a particular issue you’d like some scripts for, let me know in comments. Thanks all!

How the Push for More Inclusive Organizations Forces People to Out Themselves

Disability advocacy is one of the places where I often feel real torn. The place where I see this most is in the push for organizations that represent disabled people to employ disabled people. “Nothing about us without us,” is the battle cry. I would like to yell along. I would like to make that push along with people.

But as I’m realizing from my personal experience, it’s far more complicated than just hiring more disabled people. It’s about marketing and it’s about disclosure. Here’s a question for you: do you know how many people with disabilities work at your place of employment? Are those numbers available to anyone? The answer is most likely no, because of the nature of disability. It’s often invisible, it’s often stigmatized, and it’s often personal. So many if not most people do not disclose, especially if they have an invisible illness. Sure, there are some disabilities that are pretty obvious, like if someone is visually impaired or mobility impaired, but even then, they are under no obligation to disclose exactly what their disability is.

Let’s use my life as an example. I work at an autism organization. I have not disclosed my autism diagnosis to my coworkers, because there’s really no particular reason for me to do so. I don’t need accommodations at this job that I can’t create for myself with relative ease. I know of at least one other person in our organization who is on the spectrum but does not discuss their diagnosis or personal life publicly. We do not highlight either of us in our marketing because it would be wholly inappropriate for us to blast the personal lives of our employees. Neither of us is comfortable being out and talking about our experiences with our coworkers. For reference, we are an organization of less than 20 individuals.

My workplace has been criticized for not hiring autistic people. An organization that is over 10% autistics is criticized for not having enough autistic voices. Don’t give me BS about only autistics working at autistic organizations, that isn’t feasible or practical, and 10% is much higher than the proportion of autistics in the general population.

This means that those of us who are on the spectrum have a choice: disclose or have our voices and contributions erased.

Suddenly we are required to disclose our disability or be criticized for speaking over the voices of other disabled people. That’s a really shitty position to put someone in. Now look, I understand. If people aren’t open about their identities it’s really hard to advocate for their rights. Coming out is incredibly important for many movements for lots of reasons. But we can’t punish the people who are afraid to come out. This is why I have an issue with saying that only disabled people can speak about disability: you don’t know who is or isn’t disabled and no one is under any obligation to disclose to you. You cannot be the police of who gets to speak about disability because then you are the police of who has disabilities. That is not something that I am willing to accept.

With all of that said, it is important to continue to push for organizations that focus on disabilities to include people with those disabilities, and most especially to hire people with disabilities. Yes, this does put us in a bit of a bind: how can we hold people accountable if we have no way to get accurate numbers? How can you make improvements if you can’t really accurately identify who has a problem?

Ha, you thought I had good answers. I don’t. Unfortunately one of the most integral parts of improving life for people with disabilities is decreasing stigma, so that coming out isn’t as fraught or scary of a process. And part of that process is having visible, out members of society doing the things we consider normal. Welcome to the Catch 22 of activism.

So I suppose if there’s one thing I want from this post it’s for people to be aware that criticizing organizations for not including individuals with disabilities is not always as perfect of a solution as it might seem. You might be telling someone with a disability that they don’t count or that they have to prove their disability in some fashion. You may still choose to make the criticism, but please do not erase those who aren’t out. Note that there may be people with undisclosed disabilities, and be open to hearing that there is someone on the spectrum or with a disability that you didn’t know about.

The hardest thing to recognize is that there are virtually no actions that don’t harm anyone. So when we are engaging in activism, we need to be aware and self critical.

Featured image by Caitlin Tobias.

Who Gets To Define Sick?

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.

Musings on Mental Health Activism

In a perfect world, all people would have a basic understanding of mental illness and respect that it is very real and painful. In a perfect world, if someone disclosed their mental health status and said that it affected their decisions and life, other people would respect that without requiring evidence, gory details, or an exact explanation of how serious it really was (are you sure it wasn’t all in your head?)

Alas, this is not the world we live in. Disclosing mental health status often comes with a round of questioning and well intentioned but utterly unhelpful suggestions (have you tried exercising?) that can quickly put one on the defensive. I personally have felt pressure when writing about my mental health to engage in the “just how bad was it?” defensiveness, pre-emptively listing out symptoms and consequences to illustrate that no really, this needed to be taken seriously.

Nearly every article I read about mental illness feels the need to either specify that depression is a serious illness (if it’s a scientific or research based piece) or take a large chunk of its time to describe the internal experience (if it’s on the subjective side). There’s certainly nothing wrong with that impulse, and subjective descriptions of mental illness are incredibly important to increasing awareness and understanding, but almost never do I see someone write about an experience they had that was influenced by their mental illness without focusing heavily on symptoms and vivid, graphic descriptions.

This makes sense to some extent, but it seems odd to me that we cannot have mental illness be an influence in our lives without going the extra distance to explain the exact details. In the world as it stands, there is not enough understanding of mental illness to mention it as a factor without making your statement/article/conversation about mental illness.

Here’s where I get hung up.

As someone who wants to increase understanding and awareness of mental illness and mental health issues, as someone who is aware of these dynamics and the ways in which stigma against mental illness contributes to the requirement that mentally ill people prove how hard things are for them every.single.time, do I proceed by molding myself into the Good Depressed Person and patiently describing over and over (in the level of detail required by my listener to really understand) what it’s like in my head? Or is there something radical in simply letting myself say “I am depressed and that led to x, y, or z” without backtracking, explaining, or questioning myself?

There may be space for both of these options in the world of mental health activism. It’s easy to see how speaking openly about the internal experience of mental illness is part of activism. It very clearly increases awareness and understanding, and can help others respect the seriousness of a mental illness, as well as the fact that it is not a choice or a lifestyle. There are downsides though. I worry that making personal stories a constant factor in every discussion of mental illness sets an unhealthy precedent that people’s stories are required to be public. I worry that we’re painting a picture of mental illness that feeds into certain romantic notions of things like anorexia, while playing into the voyeuristic pleasure some people get in hearing about disturbing and graphic symptoms. I see this especially in discussions of self harm when the questions immediately turn to how deep, how often, where, pics.

It might be that having both tactics is the best choice so that we can continue to educate others about mental illness in a serious way while also recognizing that sometimes it isn’t the only or overwhelming factor in an individual’s life. Sometimes it’s just a part of life, like a twingy ankle or allergies. It gets in the way, but it doesn’t destroy.

Again, ideally, this could be a great way to move forward in activism. The problem comes with the lived experience of trying to mention your mental illness without defending it. People push. People overlook it. People argue and debate and yell after you’ve said you’re triggered. People invoke all the stereotypes of mental illness that you’ve been working so hard to fight against (lazy, taking the easy way out, not trying hard enough). These things, even if you know that they are unwarranted and are ignoring a very real factor (mental illness) hurt.

I don’t think anyone is obligated to always educate others when they talk or write about their mental health. You’re allowed to say “this thing triggered me, which relates to the rest of what I’m talking about in ways x, y, and z” without having to explain how your triggers came to be, what triggering looks like for you, and exactly how real and serious the experience was. I just don’t know how to let people do that while protecting them from the less informed folks who will take that as an opportunity to berate them for not liking triggery thing, or for not being able to cope with a situation, or whatever the case may be. And I don’t know how to recognize that people 100% have the right not to explain themselves while also knowing that these incidents might not help the larger aims of mental health activism.

This is the forever balancing act of oppressed groups that want to make things better. In order to gain the rights and treatment you know that you should have, you often need to play by the damaging rules of society as it is, putting you in a place to get hurt and perpetuating those same rules. How radical can we be in acting as if the world had already accepted us? While it might be idealistic and forward thinking to expect everyone to know about mental illness, does it actually do anyone any good when it comes to securing rights and reducing stigma?

There are no clear answers here about the “right” way to approach discussions about mental health or activism, but I wish we knew better how to help improve the world around us without making ourselves so vulnerable.

Intersections: Mental Illness and Allyship

I consider myself a white ally. I know I don’t get to pick this for myself. It is not a label but an action. I need to back up my attempts at anti-racist thought with behaviors. Trust me, I am well aware of my shortcomings as an ally: I have never been to a protest, march, or rally on behalf of people of color. I don’t write nearly as often as I should about questions of race. I rarely collect my people. Sure, I start conversations about race with my friends, I call out my family when they say utterly stupid things, and I try to make absolutely certain that everyone on all my social media platforms knows where I stand on racism. I try to retrain my brain whenever possible, educate myself, and question my problematic opinions.

But I know I could be a lot better. There were protests in the last few weeks for Michael Brown and Eric Garner, protests that I should have gone to. There was a conversation with a friend that I gave up on halfway through because it was too hard.  I know that at least one person in my family still holds to the belief that African American Vernacular is incorrect English, and I’ve stopped trying to correct them.

There are easy excuses. I’m tired. It’s hard. I’ve tried already. These are bullshit.

But where I hit a fence is this: that conversation that I gave up on last week? It wasn’t because I didn’t want to figure out how to get my point across, or because I thought my friend was entitled to their opinion. It was because my anxiety and depression took over halfway through and convinced me that if I didn’t agree with him, he would hate me and I was being a bad person. Like a very capable and competent adult, I spent a few hours crying instead of being the good ally I was trying to be.

The reason I didn’t go to the protests? The fatigue from my depression has been catching up with me lately and I’ve been sleeping 10+ hours every night. I haven’t been able to get out of the house to do even the basic tasks I need to complete for my own life. I tried to convince myself to get there, and I couldn’t escape my own malaise.

I don’t know if this excuses or exempts me from certain forms of allyship. Probably not. I don’t know if the intersection of my mental illness and other causes changes how I should behave in situations like these. Probably not. But I also don’t know how to practice self-care and prioritize my health while also working hard for others.

This all sounds like excuses to my ears, but I know there are others out there who expect themselves to always be the perfect activist. The conversation needs to be had.

 

Staying Functional

It’s been a rough week. Many of my friends, fellow bloggers, and role models are starting to show a bit of wear and tear. The whole internet has been buzzing with news about the shooting, with debates, with misogyny, with threats, with victim blaming. I’m tired. My patience is worn out. I’m getting triggered left and right by the smallest, stupidest things, and my coping skills are slowly running out.

Unfortunately, the rest of the world doesn’t stop when my spoons run out. I still have to work. My dad’s birthday will still happen this weekend and I’ll have to be social and entertain. I still have to write. I still have to clean my kitchen and cook (somehow) and deal with the sudden heat and plan for my move to Ireland next year. I just have to do it all while also feeling like I’m about to snap or break down and start bawling or just run out, stop moving, fall over and not get up.

I’m sure this is the same quandary that all those with mental illness, or those who engage with difficult topics, or those with chronic illness face: how do I remain functional and keep anything from getting worse when my reserves are almost out? I drag myself into the office, but how do I accomplish anything when my brain power is spent just trying to refocus my mind on something other than sexism and shootings and self hatred?

I’ve been trying to use a few tactics, but I would certainly appreciate any suggestions that you all have. Mostly, I’ve been trying to reorganize my priorities so that I can accomplish some things with minimal brain power. This means that my to do list has shifted away from more writing and into some easier tasks at work (as well as I can). At home, instead of trying to tackle some of the bigger project I’ve limited myself to basic, mindless things that will help me feel accomplished: putting away my clean laundry right away, making a big pot of rice and beans so I don’t have to cook for the rest of the week, paying close attention to my schedule so that I don’t miss anything. It’s hard sometimes to feel like I can do these things, but if I get one or two done each day I can head off a lot of the feelings of uselessness and keep myself from hitting a bigger breakdown later.

This also means that at work I am shying away from things that I might really screw up if I’m not all the way present. I’m doing behind the scenes work and trying to save my energy for the times I’m in meetings or have to be front facing for the company. This is the biggest challenge. Part of me is trying to accept that there are certain tasks I simply can’t do right now, but that isn’t something I like to accept and of course it makes me feel like I cannot do my job. In reality, what it means is that right now I need to focus on something slightly different, make my job something a bit different.

And when I don’t have anything that needs to get done, that means complete and utter self indulgence. It means I get to go home and take a nap, or buy myself ice cream every day if I feel like it, or go running twice, or avoid everyone if I want to, or whatever the hell at that moment sounds like it might break through the hazy fear that’s hampering me right now. I hate feeling that desperate. I hate grabbing on to any impulse that seems like it could be remotely positive, but I know that if I simply won’t get through. I hate listening to my needs. I am demanding it of myself though.

Perhaps the hardest part is being responsible for myself and my emotions. I want to fall apart over everyone, bitch people out, yell and scream and swear and cry. I want to tell everyone to piss the fuck off. I want the people who are nonchalantly commenting on blog posts about misogyny to hurt as badly as I do when I see people talk about how mental illness makes you violent. I want to puke.

But it is no one else’s fault that I feel this way. Even the people who are pushing my buttons in all the wrong ways. I still need to be responsible, and when I do lose it, I have to know to apologize and take responsibility for the ways that I can’t cope. I need to be able to set healthy boundaries: I can’t just avoid people, but I need to actively tell them I need space. It is so hard to find the emotional resources to recognize when you’re being out of line when everything feels raw. But as someone who wants to be a positive ambassador for mental illness, I need to be able to function appropriately in my relationships and with my acquaintances even when my mind is not acting appropriately.

And just for fun, I’ve been trying to take mini breaks at work during which I look at goofy GIFs on Tumblr or watch lindy hop on youtube. Little things are all that get me through. Little things are what distract me and keep my mind from spiraling. Little things are what drag me away from that nasty comment.

I will remain functional.

More About Skeptech: Individual and Societal Responsibilities

So at the conference this weekend we spent a fair amount of time talking about censorship because hey, we were talking about the internet and censorship had to come up at some point or other. Zach Weinersmith (edited because I fucked up Zach’s last name. Sorry) of SMBC gave a talk about comics as a natural experiment in censorship and argued that we should have no censorship (except maybe yelling fire in a crowded theater) particularly of art, because art needs to reflect life, and the best art reflects ALL of life, not just the pretty parts.

We also talked some about Reddit and the r/jailbait fiasco. Some people argued that the subreddit never should have been shut down, because protecting free speech is more important and we should be able to talk about illegal activities if we so choose. Should we be able to shut down the r/trees (edited because apparently the subreddit about marijuana is called r/trees. Way to confused me guys) thread simply because marijuana is illegal?

These are all really important concerns, and I am most certainly a free speech advocate. However I tend to think that our morality should be more about harm than about rights. I don’t think we should do away with the concept of rights entirely because it’s incredibly important for the safety of minorities, but in general when you have to invoke a “right” to justify a harm, you’re doing something wrong. Something that was rarely brought up in these discussions was at what cost do we allow completely unrestrained free speech. Because there certainly are harms. Zack Weinerstein made the argument that with this unrestrained free speech, we now have the most tolerant generation in history, so it’s no big deal that certain parts of the internet are steaming cesspits of hate. But that completely overlooks the damage that that hate directly does to the people who have to witness it. We may be “more tolerant” of women, but if a woman gets harassed every time she logs on to her favorite website, that is a harm.

And in addition to that, what do we really mean by “more tolerant”? A lot of these websites normalize horrific behavior by arguing that they are tolerant. They say that cat-calling a woman is no big deal, that African-Americans are just practicing reverse racism, that slurs are simply free speech, but that they think everyone should be equal. This is lip service to tolerance. But if we can actively see online through their writings for all the world to see that they treat other people like shit, clearly they aren’t tolerant. And they normalize that behavior.

For some reason, this conference seemed to focus entirely on personal responsibility in terms of free speech. You might be exposed to any number of things, but it’s your job as a responsible human being to not be influenced by any of it if you don’t want to be (apparently). But here’s the thing: societies have responsibilities too. As skeptics, we should know by now that NO ONE is immune to the influences of society. All of us internalize the messages that get sent to us, no matter how hard we try to resist (hello eating disorder that reeks of internalized misogyny. How are you today? Oh you’re all my fault because I should have just made a better personal decision? Thanks). It has been well-documented how easy it is to influence people. And when you’re constantly bombarded with certain images and certain messages, there’s only so much personal choice that you have. That limits the amount of personal responsibility you can have.

Media has to be responsible for the messages it sends. Now I don’t necessarily think this should lead to government censorship of unpleasant topics. As a lot of people said, ignoring things doesn’t make them go away, and often bringing them out into the open can help us deal with them. I’m honestly less worried about some of the unpleasant topics and far more worried about some of the glamorized topics. Take for example binge drinking. We see binge drinking all the time on TV held up as fun and awesome and hilarious and completely normal. If someone has a predisposition for alcoholism, can we hold them completely responsible if they fall into the trap of alcoholism when they are seeing how great alcohol is all the time? Do we have to take some responsibility as a society for the pain caused that individual and their family? I think we do.

Society has some responsibility to try to create media that isn’t damaging. It should be free to discuss any topic it so chooses, but I think it’s entirely possible to legislate ADDITIONAL information be available about any topic that could be triggering or influencing in a negative way: for example if a TV show depicts rape, we could require that it includes a short discussion of the characters involved and why they acted in a negative way to deconstruct the negative actions they made. And as individuals, I think that we are entirely allowed to exert pressure on media to stop perpetuating shitty stereotypes and harmful messages. We are 100% obligated to be as careful as possible about the media we consume (tell TV networks when their shows are sexist, tell advertisers when they’re perpetuating rape culture).

We cannot always be critical consumers, even when we want to be. Oftentimes we’re lacking in the choices to be ethical about the way we consume media. If I want to watch a movie that is free of sexism and racism, I would be hard-pressed to find one. We need to exert some pressure on media to provide us with more options. Weinerstein suggested that when censorship is taken away, then more types of art flourish. I do agree with that, but I think that we also need to be active in promoting different types of art and different perspectives. We need to vote with our money, and I think as a society we need to discuss larger fixes to the problems of sexism and racism in media and on the internet. If an individual has only ever been exposed through the internet to individuals who say that a woman might owe you sex if you buy her dinner, are they entirely to blame if they rape someone? No. They have some responsibility, but not all of it. We are products of our society.

There is serious harm in unmitigated free speech. I don’t know what the solution is, but ignoring the fact that there are places on the internet that actively normalize hate crimes, sexism, racism, rape, cissexism, and homophobia is not helpful to anyone. We DO have an interest in trying to keep people safe from each other and safe from internalizing negative and destructive messages. I think that people who host websites and people who host other people on their websites need to be clear about what they will and will not accept: you OWN that space, and you can easily say that you will not tolerate bigotry. People do that in meatspace all the time. Why is it unacceptable online? You can get your own damn website and spew hatred. But we will minimize the damage that you can do.

I am so frustrated with the idea that individuals exist in a vacuum and that “personal responsibility” trumps all social issues. NO. Individuals should be held responsible for their actions, but their actions should be taken in context so that we know what led to the problem. If we simply keep pointing to bad behavior and saying “don’t do that” we’re just trying to take care of symptoms, not the etiology of the bad behavior. We are all a part of systems, and our whole systems are broken right now.

Activism Online and In Person

So this weekend at SkepTech (a conference about skepticism and technology), I was on a panel that addressed some of the differences between real world and online activism. I LOVED being on this panel, I thought I had some great co-panelists and I always love to speak in public about things that I love. I thought we got to some pretty interesting points about the fact that the internet and in flesh activism have different uses, different reasons, different motivations. But there were a couple things that we never got to touch on that I’d like to explore a bit here.

 

So one of the first things that I don’t think we touched on much is self-care. We talked a fair amount about how all sorts of things can be activism: it can be blogging or being open and out or being willing to talk and answer questions or it can be tabling…but one thing we didn’t really mention is something that as someone involved in mental illness I think is really really important. Taking care of yourself can be a radical action. If you are oppressed, or if you are struggling, or if you are marginalized, then getting through each day, staying healthy, staying as relatively happy as possible is activism. JT Eberhard mentioned that having fun can be an amazing form of activism for atheists because a stereotype of us is that we’re unfulfilled. This goes the same for taking care of yourself. Atheists who are well-adjusted and flourishing are the best advertising we can have.

 

And this goes for all sorts of oppressed groups as well: when society tells you that you don’t deserve space or you don’t deserve to exist or your existence is wrong and evil and horrible, you cultivating your existence, your space, and your joy is radical. There’s a fantastic Audre Lorde quote about this: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” Many of us feel like we need to put our mental health or physical health to the side in order to do our activism. We feel that because this cause is important to us it might be more important than taking time for ourselves, or that we should feel guilty for not doing enough, or that we should always push ourselves harder. If we can reframe this instead to the idea that self-care is part of activism and that it’s simply one element of activism that we have to balance with all out other concerns (taking care of those in the movement, engaging with new people, opposing problems), we can be much more effective activists. We will have more energy and more strength when we do external activist work.

 

Another important piece of this panel was about managing online vs in person activism. One element of this that I forgot to address in the panel (oops) is that as an introvert, I am extremely picky about who I socialize with. Often, if I go to a group and there’s someone who rubs me the wrong way or who insults me for my major or who I feel I have to educate about racial and gender issues, I probably won’t go back. Now I could go through the effort of figuring out how to get along with this person, but I’m trying to work on my self-care activism and so I just won’t right now. Online I get a lot more control over who I interact with. I can turn off my computer if I want. I can block people. No one cares enough about me to email me yet, so I can pretty well decide who I want to talk to by choosing who to friend or follow or read. That’s really important for me. That gives me the space to stop those triggering and upsetting conversations when they are too much for me. That lets me set my boundaries on any given day where I need them to be. If you want to be a part of a group, all the good people automatically come with all of the less pleasant people.

 

While for some people exposure to all sorts of people is what draws them to in person activism, others of us want more protection and might prefer online activism. Online activism also gives us access to probably the widest variety of opinions, if we choose to seek them out. It is the best tool for educating yourself as an activist and as a human being simply because you can read about and learn about so many different human experiences.

 

Another interesting part of this dichotomy is that I think it’s drawn far too sharply. At this event, for example, the hashtag was projected in the room so that everyone could see what people were tweeting about the event. I don’t think this technology got used to its full potential. A lot of people were simply tweeting the hashtag with summing up the information that was being presented. I preferred to use it to interact with what was going on, to ask questions, to make rebuttals. I think if more people used it in BOTH of these ways, it can bring together in person and online activism in a really interesting way by making the in person experience more interactive and by allowing others who are not there in person to see some of the event. Beyond that, I also feel it gives those of us who might be a bit more introverted a way to jump into some of the in person activities that were taking place. I think that integrating technology into in person events is a wonderful way to bridge the gap and give us some of the benefits of both.

 

And the final point that I was interested in is kids. I sort of think that children are natural activists. When they get upset about something they want to do something about it: they’re still idealistic enough to think they can change the world. But even more than that, kids haven’t internalized oppressions the way adults have (young kids primarily, this applies less and less the older a kid gets). As JT said in the panel, everything that we do that is NOT oppression or is behaving in a way that doesn’t conform to oppression/gender roles/racial roles/etc is activism. Kids do this ALL THE TIME. We have to teach our kids hatred and how to oppress each other. Not explicitly of course, but we give them lessons through our own behavior. I think we start out with a generation that doesn’t oppress because they haven’t learned it. If we can hold on to some of that state of simply NEVER learning oppression, we could make huge differences in our future. Because every time someone acts in a way that challenges a gender role, it is activism. While we don’t necessarily feel the impacts of it when kids do it (primarily because of some stupid ageist bullshit), we should recognize that often we start out naturally as activists.

 

I’m not 100% sure about this theory, but I think it could have merits. Thoughts in the comments?

 

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.