Autism Speaks is No Longer Searching for a Cure: Here’s Why That Gives Me Hope


Note: This is my personal view. It does not represent the views of any organizations with which I am affiliated.

Autism Speaks, the largest charity organization associated with autism in the U.S., announced this week that they would no longer be seeking a cure for autism. For those outside of the autism community, many autistic self-advocates have long been decrying Speaks’ push to find a cure, saying that the money should be spent on actual services for actual people, and that the “cure” language says their lives are not worth living. Especially within the neurodiversity paradigm, autistics understand that their brains cannot simply be rid of autism and still exist as their brains. Autism in inextricably linked with many people’s identities. So speaking of a cure felt like an attack on their selfhood. It said that because autistic brains are different, they are bad and should be eradicated, despite the fact that many autistics were loudly saying they did not want to be changed, they wanted support, understanding, accessibility, and opportunities.

Speaks has made many, many, MANY other missteps. Their unending focus on parents rather than people who are actually autistic, this horrific ad, the lack of actually autistic people on their board or in high up positions in the organization, the language they used around autism (epidemic, burden, etc.). It all adds up to a big ol’ pile of shit, and I have yet to meet someone who is autistic who hasn’t just said “fuck Autism Speaks, I’m out.”

So this rolling back of the “cure” language is too little too late for most people I know. I understand. It is a pretty pathetic attempt to win back the people you supposedly serve. I know a lot of people who are saying it doesn’t actually much, and that there is still absolutely no way that they will support Autism Speaks (especially without any apologies for previous mistakes). I am completely sympathetic to this viewpoint, and I also am not particularly interested in supporting Speaks.

But what makes me hopeful about this is not actually Speaks. What makes me helpful is that there have been YEARS of self advocates pushing for this change, without much response. It took years before people outside the deep neurodiversity community began to notice and understand the problems with Autism Speaks. So it gives me hope that finally, FINALLY people are listening. FINALLY the voices of autistic people were loud enough that the largest autism organization in the country felt the need to change. It may be a nominal change, with little in the way of actual money being moved to helping people, but we were loud enough that they couldn’t ignore us any more. They felt that there was enough pressure that they HAD to do something.

What this says to me is that we are growing more organized and more powerful. People are starting to take note. We have found some of the correct channels to reach the people who are most misguided. I am hearing more and more rhetoric that recognizes the value of disabled and autistic people.

It’s a baby step. It does not fix the past harms. We still have such a long way to go before people have the services, respect, and fulfilled lives that they deserve. But I see it as confirmation that we, the self-advocates, are doing what we should. I see it as a big old gold star that says “keep on keeping on. Change is possible.”

I want all of us to stop and recognize that for ourselves. We did this. It is small, but Speaks is fucking huge, and we made them budge. Oftentimes that first movement is the hardest. We can do this.

The Problem with “I Said Yes”


I’m currently engaged and also a compulsive Type A planning geek, which means that about 50% of my brainpower is devoted to wedding planning at any given time. Unsurprisingly, Facebook, Google, and every other ad service on the internet have figured this out, which means that I’m constantly getting very stereotypical wedding ads, aimed at brides who have bought into the wedding industrial complex a bit more than I have.

And holy hell is there a lot of disgusting, sexist expectation wrapped up in many of these ads. One that has been particularly grating on me for some time is the proliferation of items branded with the phrase “I said yes” or a variation thereon. I get that it’s a cute way to talk about getting engaged, and an exciting moment, but there are a lot (A LOT) (SO MANY) problems with it. Some of them are obvious, but others less so, which is why I want to unpack some of the ways this phrase encapsulates my problems with the way people approach marriage.

The most obvious issue here is that I have never once in my life seen anything marketed to a man that says “I said yes.” I’m really 100% over the idea that a. all couples are heterosexual and b. men do the asking, women do the accepting. It’s antiquated and sexist, and implies that women should not be in charge of their own major life decisions. Men take charge and ask the question, while women wait and respond. It’s a shitty message to send, and it’s also just inaccurate. Women can and do pop the question, and I for one do not like being erased from the narrative of marriage when I’m trying to plan my wedding.

Plastering the words all over everything makes it cute to be the person who isn’t making the decisions. It focuses the attention on the fact that the man asked and the woman responded, and it romanticizes the kind of helplessness that dynamic can embody. It says “the moment that there was a power dynamic in this relationship is the moment that was important,” instead of finding something that embodies whatever relationship created the proposal.

But what’s even weirder is that all the “I said yes” crap erases the person who did the asking (typically the man) from the wedding narrative, except as an accessory for a woman to live out her wedding dreams. I’ve seen very few “I asked” pieces of paraphernalia, and they are always paired with “I said yes,” which sends this message that the wedding is all about the woman (a sentiment echoed in approximately a million other places, and a sentiment which should go die in a fire). The man does not get to be excited about proposing, he clearly does not want anything that broadcasts his engaged state, and if he does broadcast it, it’s probably because the fiance made him amirite?

No, you’re not right. I happen to know for a fact that my fiance is pretty damned excited about being engaged and getting married. It’s just as sexist to expect that men don’t get to express excitement about exciting things as it is to expect that women don’t get to propose. I want my fiance to be just as important to my wedding as I am, because hey, we’re both getting married. We should BOTH be treated as equal parties in the planning process.

But those are issues that exist as part of the larger wedding industrial complex and the sexism it embodies. I have issues with the phrase “I said yes” for even deeper reasons. It took me quite some time to figure out what it was, but it I started to notice that I was using language contrasting being an “adult” with the way I felt about people who use the phrase “I said yes.” Now I in no way believe that people who get proposed to and say yes are children, as strongly evidenced by the fact that I’m intending to marry one of them. It makes complete sense that one partner will feel more assertive or want to make a big deal out of things and the other might not want to set up a big romantic thing, or would rather just respond. In most cases there will probably be an asker and an askee if there’s going to be any kind of formal “proposal.” That’s cool.

What makes me feel as if the whole “I said yes” business is somewhat immature is the fact that it focuses all of a big, important, life decision on one single moment rather than recognizing that it should (and for most people is) an ongoing conversation, in which both partners participate equally and discuss the ramifications of that big life decision. Acting as if two people actually really decide to get married in the moment of the proposal is ridiculous, and bringing the focus back to that moment again and again inflates the importance of it. Sure, I did a big, goofy proposal, but I recognized that it was a formality. I recognized that I was doing it because it was FUN. The actual proposal is not the mature, thoughtful, serious part of the “do we get married” discussion. It’s the fun, joyous, celebratory bit, and the “I said yes” obsession confuses and conflates the goofy, childish part with the actual, serious, “let’s decide what we do with our lives” bit.

Getting married isn’t a decision you make in one moment. We should be glorifying and romanticizing the process of figuring out how to build a life together, in all the myriad ways that happens. Proposals are fun, but really that’s what they are: fun. They’re not the big, important, life changing decision. That decision should be made carefully, with thought. It’s totally ok to focus on “childish” things sometimes, and to enjoy them. What’s concerning is when the childish things are treated as adult, mature decisions, rather than as concerningly thoughtless decisions. I’m sure there are people out there who do propose without discussing marriage at all ahead of time. That’s not fair to either partner or the long term health of the relationship.

When I first expressed frustration with this phrase, I responded by saying “I asked like the fucking adult that I am.” I realize that this is a gross simplification. I don’t think being asked is childish. But now I’m going to get into the ranting part of this post, because here’s what I DO think is childish and what I DO want to distinguish myself from when I say that I asked as an adult: the people who see “I said yes” as the single most important decision of their lives, the people who use these cute phrases and “romanticism” to hide the ways in which they allow their identities to be subsumed under that of a spouse, the people who not only let things in their relationship happen in gendered ways (this happens to everyone) but who actively embrace it as romantic and sweet.

What is childish and demeaning to oneself is the implication that the asking and answering of the question is the important moment in the relationship, this power dynamic, public, ritual laden moment, rather than the conversations that nearly every couple has before and after, usually on equal footing, about whether they want to get married, how they see their relationship progressing, what they want from marriage and from the relationship, their timelines. I seriously doubt that most people actually have a relationship in which the power dynamic is so broken that there is one party that gets to decide when changes happen and the other party simply has to accept or not.

So the uplifting of those antiquated dynamics in the cutesy phrase “I said yes” and the concurrent moment of disparate power and disparate roles is what pisses me off, and makes me want to distinguish myself from it as someone who is complex, who has opinions, who comes to my partner equally, who makes their own god damned decisions, who actively participates in the direction of their relationship. THAT is why I wanted to use the word adult. Because my relationship empowers me rather than infantilizes me, and that has nothing to do with who asked or who didn’t, it has to do with the fact that the moment of asking really wasn’t that important and probably shouldn’t be that important in any healthy relationship (except as something fun).

And here’s part of where I want to call myself out. I am getting too invested in the Big Public Expensive moments. Sure, I’m an event planner and a romantic, and so I find them fun. I like rituals, and I like parties. But those are excuses. I am buying in to the capitalistic Wedding Day is the Most Important Day bullshit, and while I think I’m doing better than many people, I’m still disgusted by how it turns me in to a person who doesn’t look complexly at their own life and needs, and doesn’t think deeply about the long life that I’ll have with my partner after these singular moments that Must Cost a Lot of Money. The wedding day is cool and all, but in terms of importance, it’s pretty low. The important moments are the times we support each other through shit, the ways we deal with fights, the kindness we show each other, and the ways we engage each other’s minds. I’m losing sight of my adult, empowered relationship and falling into the trap of “it’s pretty so it’s important.”

So I’m recommitting to the fact that I would like my wedding and engagement to reflect the partnership I have with my fiance, and who we are as people, as well as the tenor of our relationship. I can do better and I will do better.

For Niki


Today was a shit day.

For those outside of the atheosphere, you probably don’t know who Niki Massey is. You probably don’t know that she died today. You don’t know about her years long struggle with depression, anxiety, BPD, chronic pain, fatigue, and of course the fucking system designed to help people like her that had done jack squat for her until the day she died.

Niki was a writer. She wrote erotic fiction to make a living and she wrote inspiring, amazing, social justice pieces because it was who she was and what she cared about. She lived the kind of life that our media and our society like to pretend doesn’t exist; the life of a black, asexual, disabled woman. On top of all of that she was outspoken and took no shit. Because of who and what she was, I want to talk about her. I want to tell stories about her. I want to make damn sure that the world knows who she was, the systems that did this to her, and exactly how much she gave to the communities she was a part of. I want you all to know how strong she was, how smart she was, how loved she was.

So here is what I know about Niki. Here is who she was, at least the pieces of her that I knew. Here is a life that fucking mattered, and I will not let it disappear without being remembered.

Niki was life itself. This is why the idea of Niki not being alive is so impossible to fathom. She was vivacious. She had a hard time keeping her volume at the appropriate level, but that was part of the joy of Niki: she laughed loudly, she always had a comeback, she would never be silenced. Her blog, Seriously?! was all of that wrapped up in biting wit, acerbic commentary, and no fear about being misunderstood or misinterpreted: Niki simply told it like it was, and fuck you if you didn’t get it. She wasn’t flowery or fru fru, but hell if she had a way of creating metaphors and descriptions that were out of left field, hilarious, and surprisingly informative. In the last year or so, I’ve really had a hard time keeping up with any blogs. Niki’s was always the first one I would go back to check on. She was like a fucking fireball of common sense when the world was just shit weeds. She burned past it all.

Niki was giving. The first time I met her, I was struggling to understand my sexuality. She was the first real life asexual person I had met, and she welcomed me with open arms (not really, we’re both touchphobic BPD kids, that’s not how we roll. Fuck, we were. Were.). She talked to me about her journey, and how affirming asexuality was for her, and how her relationship worked. She was completely unafraid to be vulnerable. It was so refreshing, and helped me come to terms with who I was, with changing sexuality, with trying different things and realizing they weren’t for me. She helped a lot of people on that journey.

Despite her chronic pain, Niki still managed to do more volunteer work than most able-bodied, privileged fucks out there. She volunteered as a clinic escort at Planned Parenthood, volunteered her time as a speaker at multiple conferences (even when she was increeedibly nervous), and spent far more time than any one person really needed to wading through the shitpools of the internet to create blogs and responses that were POSITIVE.

At the first Con that I met Niki, some asshats decided to troll our Twitter feed and call themselves #braveheroes. Niki was one of the loudest voices laughing at the sheer ridiculosity of it. It instantly endeared her to me. But I’m going to be gross and honest. Niki was an ACTUAL FUCKING brave hero. Day after day after day she got up and worked through pain and talked about it. She was not afraid to let people know what was going on, to talk about the nitty gritty, intimate details of chronic illness and mental illness. She did everything right. Every fucking thing. When she felt suicidal, she went to the hospital. She asked for help. She worked for HOURS on her disability hearing to make sure that she had everything in order. She worked her ass off on her books to try to contribute and feel meaningful and useful. She was a god damn inspiration.

I love you Niki. So many people loved you. It hurts me so much that what you heard were the messages from society, telling you that your body, your skin color, your gender, your ability to work, those were what mattered. Not your brilliant mind, not your compassion, not your wit, not your kindness, not your hard hard work. Fuck that. You mattered. You mattered so much. And you still do.

Today I am remembering you up on stage, speaking passionately, wearing the skulls and purple outfits you loved so much, celebrating the fuck out of October, your favorite month.

Real Tips for Really Decreasing Your Anxiety


Anxiety sucks. Clinical grade anxiety is basically sweaty monkey balls.

Over the course of my time in therapy and various kinds of treatment, one of the things that I have wanted more than anything is to not feel anxious all the time. Unfortunately it isn’t as easy as walking in to therapy and having a therapist tell you what will make your anxiety easier. Typically you have to do some work on the roots issues before you can even get to the real, concrete strategies that you can use to make anxiety less intense or less disruptive.

I want to share some of the strategies that I have learned with you. If you’ve been diagnosed with anxiety, you may already know some of them, but there’s also a possibility that depending on the type of therapist you have, or whether or not you’re seeing a therapist, you may not have heard them before. Some of them might work for you, some might not. That’s ok.

It’s also important to remember that all of these strategies are for dealing with anxiety as it’s happening and for trying to decrease the immediate intensity of the anxiety. If you’re finding that you have intrusive anxiety on a regular basis, you may need to talk to someone or get on medication or do something else to help stabilize your basic emotional state so that these strategies are more effective and so that you don’t need them as often, but these strategies can help as part of a larger treatment plan aimed at decreasing instances of anxiety.

This one will be a little long, but hopefully that’s because there’s a lot of good information in it.

Mindfulness Techniques

The first series of techniques I’m going to talk about all circulate around mindfulness. Don’t get scared off by the name: it’s not spiritual or woo woo, it’s not doing nothing, but it is also not easy. Mindfulness is essentially paying close attention to what is actually happening in this moment. It will take time and practice to get good at, and I strongly recommend practicing it when you’re not anxious so that when you are anxious you can do it without getting frustrated or feeling like it’s pointless.

There are essentially two ways you can do this: you can pay attention to something internal or you can pay attention to something external.

Internal techniques:

  1. Breathing

This is a nice one because you can do it anywhere. You always have your breath, and you can always take a minute to stop and pay attention to it. There are a few different things you can do to help yourself focus. One of the easiest is counting. Some people suggest breathing in to a count of four, then out to a count of four. DBT recommends counting your breath, and always breathing out one count longer than you breathe in. You can choose the number that feels good to you. Whatever you choose, pay close attention to the numbers and what it feels like to breathe. If you notice other thoughts, that’s fine. Just let them happen and then refocus on your breath.

Another way to use your breath is to pay very close attention to the actual physical sensations of breathing. What does the air feel like coming in through your nostrils? What part of your body expands as you breath in? Especially focus on trying to breathe from your diaphragm. You should notice your stomach moving rather than your shoulders or chest.

  1. Visualization or other sensory imaginings

You can tailor this one to your own preferences: if you’re a visual person, then use imagery. If you rely more strongly on a different sense, you might imagine a song or smell. But the idea is to think of a place or sensation that is very calming to you, and to imagine it as vividly as possible. Put yourself in a place or setting that feels safe. Describe it in great detail in your mind. For me, I imagine a huge library. It smells like old books, and has thick, imposing marble architecture with nooks and crannies everywhere. There’s a huge, overstuffed armchair that looks out a large window onto an empty field. I can read whatever I like for as long as I like, with no impositions or tasks to do. It’s quiet, the special quiet that comes from marble soaking up sound, with the occasional tip tap of a librarian’s shoes across the floor. Take yourself to your safe place, wherever it is and stay there until your body has relaxed.

3. Body scan

I like to use this one at bedtime. It’s fairly simple, but takes some time and patience. Start at the top of your head and spend time focusing on each part of your body in turn. Notice what your scalp feels like, if there’s anything touching it, if it itches, if you’re tense there. Again, your mind might wander, and that’s ok, but simply notice then refocus on what you’re doing. Move down your body and do this with every body part. You can go as small or as big as you want, but the smaller you go the more likely you are to notice where you’re tense and find ways to relax.

4. Progressive relaxation

This is something like a variation on the body scan, with a little more umph to help you relax your muscles and body. This time, as you move down your body, at each muscle you reach, tense as hard as possible for a count of three, then release. That’s it! This is a slightly easier one to start with since it gives you something to do instead of just something to pay attention to.

External techniques

  1. Descriptions

I find this one works very well if someone else is with me and they are trying to help. Anxiety is anticipation of a fearful event or situation, so one of the ways to combat it is to remind yourself that you’re safe. This technique works by asking you to describe in as great of detail as possible, the room or space around you. I like it because if another person is with you, they can prompt, or you can talk to them and it doesn’t feel as weird. It doesn’t seem as if it would do much, but if you pay close attention to what you’re describing, it can take your focus off whatever is making you anxious.

2. I Spy

This is a variation on the description game that gets your brain a little more involved so that it’s harder for the mind to drift. Pick a color and find every instance of it you can. If you’re in a small room, find somewhere with more things in it and take a few minutes to play. I was surprised at how into it I got and how quickly the anxiety receded because I wanted to get every green thing.


Physical Techniques

Many times when you feel anxious it seems as if it’s your brain that’s making it happen. Your thoughts are spinning or you’re saying nasty things to yourself. In reality, anxiety is an incredibly physical experience, and even if your thoughts are what’s causing the anxiety, your body will react. Helpfully, this means that altering your body can also alter the anxiety in your mind. Here are a few ways to bypass the mental and go straight to calming down your body.

  1. Deep pressure

Deep pressure is something that tends to work for people on the autism spectrum, but if you find it comforting, then GO for it. Deep pressure is basically what it sounds like: providing a lot of pressure on your body to help it calm down. This could be a weighted blanket, a strong hug, a weighted vest, or even just burritoing up in your blankets nice and tight and snuggly. Try experimenting and see what works for you!

2. Exercise

No, exercise will not cure your anxiety. Don’t worry, I will not tell you that. What exercise CAN do is a. work as a a helpful preventative measure, and b. help you to regulate yourself when you are feeling anxious. If it’s safe and healthy for you to do so, one method is to exercise as vigorously as possible for 5-10 minutes (full on sprint, or something equivalent), and then calm down to a walk or cooldown. Normal exercise can also help let out some anxiety, but at least according to my therapist, the intense exercise followed by a more relaxed pace does some tricky shit to your body that gets it to calm down quickly (I do not understand this science, nor am I a scientist, so take this with a grain of salt and see what works for you). Sometimes all it takes is a walk to shake up the anxiety.

3. Ice water

Be careful with this one if you have any heart conditions or similar issues. However if you don’t, and you have some time and space, this is one that can REALLY affect you and have immediate results. Fill a bowl with ice water. Now stick your face in it. Yup, that’s the whole thing. The important part is to get the ice water on the place just below your eyes. Again, some physiological magic happens that helps your body calm down. If that’s too involved you can hold ice against your face, or an ice pack, but focus on that area where you get bags under your eyes. I’ve never personally been a fan of this one, but it might work for you!

4. Intense sensations

One good way to distract from anxiety is to do something that you HAVE to pay attention to. Physical sensations are a great example. Hold ice cubes, punch a pillow, take a hot shower or bath, or listen to music that really speaks to you. Pay close attention to what you’re doing instead of on the anxiety.

5. Notice your body

Anxiety often comes with physical manifestations: tensed muscles, an uneasy stomach, or a clenched jaw. Take stock of what your body is doing, and if possible, adjust it. You can unclench any muscles or body parts that are tense. You might use breathing to calm your stomach. You might stretch if some of your body parts are feeling tight.


6. Notice your physical needs.

It’s really really easy to forget about your basic needs if you’re very anxious, but sometimes the most basic levels of self care are the most effective. Take stock of your physical needs. Are you hungry? Thirsty? Do you have a headache or other pain? Do you need sleep? Have you moved your body at all today? If any of these needs are not fulfilled, or if you’re dealing with pain, try to manage that first. You’ll often find that your anxiety decreases once you take care of your body.

CBT Techniques

These techniques are more about challenging the thoughts that are leading to anxiety. I don’t tend to find them as useful, but for some people they are the most helpful of all, as they head on address the anxiety. Test them out and see what works for you.

1.Check the facts

Of all the exercises for thinking your way out of jerkbrain territory, check the facts is my favorite. Essentially you sit down and see if your emotions are based in facts or not. Sometimes you might want to check in with other people to see if you’re perceiving a situation correctly. So for example if you feel incredibly anxious about a test, you might ask whether you’re prepared for the test, whether you have a history of doing poorly on tests, or whether the test is likely to have a huge impact on your future. If you have clinical grade anxiety, in many cases your anxiety will not be commensurate with the things that are actually happening.

2. Gratefulness

I personally despise these types of exercises because the good things in my life don’t seem relevant to whatever is making me upset, but for some people they work really well. Essentially you want to make a list of the things you’re grateful for in your life, as a way to combat anxiety about the bad things that are happening. If you’re feeling particularly down on yourself, you might also make a list of qualities about yourself that you like.

3. Work!

As mentioned before, distraction is often a good way to decrease anxiety in the moment. If you know of something that requires your full attention, that can be a great distraction. Maybe it’s working, reading a book, doing a tricky puzzle, or some other form of work that is high concentration. Some people find that the anxiety distracts them too much, but if you can get focused, it’s a great way to distance yourself from the anxiety until you feel more calm.

4. Challenge your thoughts

It’s easy to think that anxiety comes directly from a situation. In reality, anxiety typically comes from thoughts about a situation. For example you might think that you are anxious because you are supposed to go to a party. But in all likelihood you’re having thoughts about the party, for example “I will be awkward,” “No one will like me,” “I won’t know how to behave.” Those thoughts are what leads to the anxiety. If you can identify which thoughts and beliefs are leading to the anxiety, you can ask yourself whether those thoughts are realistic or true. This can be another place to ask for help from someone who might have a less biased opinion about whether no one will like you. If you can start to believe thoughts like “I can find one or two people to talk to at this party” instead, your anxiety will decrease.

5. Probability estimates

If you like facts, this is a great technique for you. Many times we feel anxious about things that are not very likely to actually happen. It can be good to spend some time estimating how likely it is that the event will actually happen. If you’re very anxious about getting on a plane, you might read up on the statistics of how often crashes actually happen (it’s really, really rare). Focusing on those statistics can help remind you that you are most likely going to be completely ok.

Now that this post is over 2000 words long, I think it’s probably time to stop. If you have more ideas or suggestions, feel free to add in the comments. Remember that none of these ideas are a treatment plan that will help you address clinical and chronic anxiety. They’re just things that can help. Good luck!


What’s Wrong With Clinton? A Study in Overwork and Sexist, Classist Expectations


I recognize that I’m hitting this topic a little late, but I had a busy week last week and I still think it’s an important thing to discuss.

This isn’t really an article about Hillary Clinton. I mean sure I’m going to talk about Hillary Clinton, but she’s really just one example of thousands of women who work in the same sexist milieu. She is simply the highest profile example of something that we all experience when we are expected to overwork ourselves and still show up to work with a smile.

Last week, people became utterly concerned with Hillary Clinton’s health because it is one more way to show that she is unfit to be president. It’s a transparently sexist criticism, since we’ve had chronically ill presidents before and no one today seems particularly upset over that. Women are clearly inherently more frail, so any sign of weakness is evidence that she could drop at any moment.

In response, I’ve seen some memes along the lines of “Clinton had pneumonia and kept working. If that’s not strength, I don’t know what is!”

Neither of these seems like an appropriate response to a 68 year old woman fainting while working.

Instead, I think we should be asking some questions about how she ended up in this position. Why has she felt the need to continue working through pneumonia? Why has she made an additional effort to keep her illness hidden? What changes can we make so that people aren’t just passing out while they’re trying to do their jobs? What the fuck is wrong with our society that we feel we should criticize someone who has overworked themselves instead of offering them support?

Even more importantly, if someone who is as privileged as Hillary Clinton still feels these pressures, what about the average peons who don’t have thousands upon thousands of dollars and wealthy connections and basically every privilege box checked except for gender? I recognize that campaigning is something of a special circumstance, as it’s a directly competitive job, and if one candidate decides to keep working through illness, the other one almost has to in order to keep up. But I also see in the ways that we’re talking about Hillary Clinton’s pneumonia many of the same problematic attitudes that keep the average Joe at their job through sickness and injury.

The first element of the problem that I see is the evidence that no one is immune (pun intended) from having their health held up for public discussion. I’ve heard numerous times from friends with chronic illnesses that their bodies and abilities are suddenly considered public property the moment health comes up. This is doubly true for women, whose bodies already get discussed without their consent on a regular basis. Even though Hillary Clinton was trying very clearly to keep her health a private matter, hundreds of people seem to believe that it’s relevant to her job performance and her abilities.

That’s the second element that’s a problem to me. For people who are chronically ill, there are nowhere near enough employment protections to help them find and retain jobs, and this particular debacle highlights the way that “health” is considered a prerequisite for work. I think there are some layers of complexity here, because it’s true that there are some illnesses that can make it impossible to fulfill certain job duties, however our current system tends heavily towards providing few to no accommodations, judging people on a moral level for illness or sickness, and providing minimal time off to care for one’s health. That makes it really difficult to keep up work when you’re dealing with illness. If even our wealthiest and most privileged are struggling with finding a way to continue at their jobs without being criticized and nitpicked for any illness, then how are the rest of us supposed to get by?

Perhaps even more troubling is the response that says Clinton is exhibiting strength by working through pneumonia. Refusing to practice self care is not strength, it’s unhealthy and potentially dangerous. I understand the pressures that put Clinton in a position she felt she had to do it, but I don’t think we should be praising the behavior. We should be talking about how we create a culture where that’s kind of odd and worrisome.

Health SHOULD be a matter of national importance, but not for the reasons it’s being discussed now. It should be a matter of national importance because people don’t have adequate sick days or feel capable of taking their sick days without falling behind or being judged poorly by the higher ups. It should be a matter of national importance because we currently see it as completely normal to go to work while truly, dangerously ill, and because it’s considered evidence of a good attitude to prioritize work over health. It should be a matter of national importance because anyone who actually is chronically ill understands just how few opportunities there are for anyone who isn’t completely able bodied.

But it really shouldn’t be news because maybe someone who appears to be mostly in good health got sick and now we want to use it as additional evidence that she’s not good enough. There’s no world in which I would describe Hillary Clinton as “frail” but I also don’t want to praise her for continuing to exhibit behaviors that are unhealthy and are demanded of most of us in the real world where we’d get fired if we took a week off for health reasons.

So let’s talk about health and work. But let’s not talk about Hillary Clinton.



I Am Not Less Human Because I Will Never Have Kids


If you have not heard this, then you are a lucky person: when you have a kid, you realize what love really is. Or some variant of that, that implies that the love a parent feels for their child is better, more, and utterly different from any other kind of love out there. In some cases, this is even put on par with an integral human experience, or used as a way to hold parents above others, as more loving, more compassionate, more…HUMAN than other people.

I am so over this bullshit.

Every single human being on the planet experiences things differently. As an example, people with Borderline Personality Disorder (myself among them) experience emotions more quickly and more strongly than most other people. “Normal” people (sad lives that they lead) will probably never experience joy on par with the joy that I have felt, or experienced Arthur Miller as the transcendent thing that I have. I personally have never felt compersion, although my friends tell me that it’s an amazing and powerful experience.

We all have different experiences, and beyond that, we have brains that process those experiences differently. It is patently absurd to posit one experience as the most/best version of an emotion, and far beyond that to connect any particular experience with an essential humanity. This is the same kind of bullshit that says romantic love is better than nonromantic love. We cannot put an hierarchy on what kinds of relationships are the most powerful and  meaningful, because (holy shit) people are different and experience things differently.

You have no idea how powerful other people’s emotions are. Perhaps you got a big old dose of baby hormones when you had your kiddo and you bonded really well. Some parents don’t, and they treat their kids like crap or neglect their kids. Some people have brains that feel ALL THE THINGS ALL THE TIME without any babies involved. Simply because YOU experienced love in a new and different way because you had a kid doesn’t mean that EVERYONE will or that EVERYONE is missing out on something until they have a kid. Saying so is condescending and presumptuous.

Intensity of feeling is not a marker of a life well lived. We already have enough myths that say having kids is necessary for a woman to live a good life. We do not need to buoy up the egos of moms at the expense of people who choose not to have kids or who cannot have kids. We are not defined by the children we do or do not have, and those children do not turn us into completely different (better) people.

Not only that, but deciding for other people what experiences are important and meaningful is condescending and presumptuous. It is perfectly fine to say that for you, having a child changed your life and your emotions. It is not acceptable to tell other people that this will or should happen to them. Perhaps it is true that biologically momfeels are different from every other feeling. That does not make it better or more important. Literally every feeling is unique. Get over it.

I Do Not Need to Be Suicidal to Justify Antidepressants


I take antidepressants. I have for some years now, and I’ve found them helpful to keeping my emotions steady and stable. I don’t spend a lot of time talking about medication, because it’s not something that inspires strong feelings in me: my medications have not been life-saving or even radically life-changing, they do come with side effects, and overall I’m ambivalent about the fact that I am and will continue to be on meds long term.

But now I’m angry and I do have strong feelings.

A friend of mine posted a few weeks ago about this ass of a picture:


She shared an incredibly personal story about how starting on antidepressants very literally saved her life when she was in the hospital with a severe eating disorder. She wrote quite beautifully about the experience of being at such a low weight with such severe food refusal that she was very literally in danger of dying until she started on Prozac and was able to feel comfortable enough to eat.

And it made me so, so sad. It not only made me sad that this illness was such a fucking asshole, but it made me sad that we have so convinced people that mental illnesses do not deserve real treatment and that medication is bad that someone has to be on death’s door before they’ll consider it. We have to tell graphic, personal stories of how antidepressants very literally and directly saved our lives in order for the medications to be seen as acceptable.

Here’s an idea: my antidepressants are none of your fucking business, and I don’t have to justify using them to you.

Antidepressants have never saved my life. Honestly my antidepressants have never made a drastic enough difference in my life that I can point to changes and say “yes, that.” What they do is give me some slight relief from depression and anxiety, enough that I can engage a whole host of other skills that actually allow me to live a life I like. They improve my quality of life.

The idea that we should not be allowed to take medication to improve our quality of life is part of the bullshit natural fallacy that says medications are inherently bad, but also part of this weird victim blaming mentality that says if someone is mentally ill then it’s because they’re not trying hard enough or they don’t have the right attitude.

Part of this misunderstanding is the idea that if your quality of life isn’t good enough it means you’re not trying hard enough or perhaps that you deserve it. Some people even seem to think that suffering is good or necessary or deserved. They think it builds character or that it’s a badge of pride and purity. That all is horse shit. If someone is suffering and we can make it better, we should. That means that if medication can make things better, a person absolutely should feel comfortable making the decision to take meds.

Sometimes, no amount of therapy or skills will really improve things. Or they might some, but medication makes it even better. Sometimes you need medication to give you a boost that makes therapy and skill effective. There’s all kinds of reasons that people take medication. But if it lessens your suffering or makes your life better, no one has the right to tell you not to take it. No one should feel like they have to justify making a choice that makes them happier at no cost to others. Sure, medications have side effects, but that is an individual and personal calculus to perform. For many of us, improving our quality of life is far more important than some kind of purity from Big Pharma.

There is nothing so wrong with medications that we should feel we have to be on the verge of suicide in order to justify taking them. There is absolutely no reason that anyone should ever feel they have to tell a story about nearly dying in order to convince others that medication is acceptable. The improvement of quality of life is reason enough to do something. We as human beings deserve more than just survival: we deserve some amount of happiness and fulfillment in our lives. Having a mental illness doesn’t change that. People with mental illnesses also deserve happiness. It’s not selfish or bad for them to want medications that make them feel better. “Feeling good” is absolutely enough reason to want to do something. It’s even enough of a reason to take medications that may have side effects. Diminishing suffering is a major part of our goals as compassionate and reasonable humans. The hatred against medication clearly has some other motivation than the good of the people involved if we have to rely on “it’s literally life saving” in order to be believed, instead of simply being able to say “it helps me feel better.”

So for anyone who feels like others need to “prove” how effective meds are: you can fuck right off. The only person that needs that evidence is me.