It’s Not About the Fucking Straws Anymore

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I would put a “this is the last straw” pun here to start off the post with some levity, but honestly I’m too cranky so you get Serious Post from start to finish. You’ve probably heard that a number of cities are proposing banning plastic straws at a variety of levels, whether just in restaurants, or from being sold at all. What you may not have heard unless you’re active in the disability community is that many disabled folks are asking that this not be a straight out ban, as straws are accessibility devices for people with limited mobility or motor control. There are many people out there who cannot drink without a straw, and plastic straws are particularly well suited to the needs of disabled people as they hold up for a long time (many disabled people take longer to drink, and paper straws melt), they are the right size (larger metal straws can be a choking hazard), they are flexible, and they don’t require intensive washing like reusable straws (which many people with limited motor skills or mobility can’t do).

So that’s a lot that just happened in a paragraph. It’s not uncommon that when one group tries to do something good, someone else mentions that there’s an intersectional effect and we could approach it differently.

But holy moly have people been total assbutts about this. Over and over I see abled people saying “oh, this is easy, just use a biodegradable straw/metal straw/reusable straw” despite the fact that I have literally seen dozens of articles in the last two days without even looking about why those alternatives aren’t feasible.

What really chaps my ass about it though is that when presented with the facts, I have seen multiple people respond with “well it’s still just not worth the environment.” As if it’s fine to just ignore accessibility if you feel like it. As if disabled people can be disposed of if there’s something MORE important. As if the ONLY thing between us and complete global warming meltdown is the straws and so it is vitally important that disabled people give them up.

Don’t get me wrong, I’m all for decreasing our use of plastic straws for those of us who can. But at this point it’s so obvious that it’s not about the fucking straws anymore. It’s about the fact that able bodied people would rather focus on their own feel good emotions that they can “do something good” than listen to the basic accessibility needs of disabled people. I do mean very basic: we’re talking about the right to take a drink with some level of independence. We’re talking about the ability to go buy food in the community and exist publicly.

The more I push on it, the more it becomes clear to me that able bodied people are totally willing to just let disabled people live subpar lives, as if that’s the price we should have to pay for daring to be disabled, as if disabled people are the ones who have to make the necessary sacrifice to protect the plane. Someone’s gotta give things up, so why shouldn’t it be your right to have a drink with some level of independence?

But it’s super obvious that plastic straws ain’t gonna save the environment. There are thousands of other things that people could be advocating for if we can’t perfectly implement a straw ban, and in fact there are dozens of things that impact the environment much more significantly (plastic cups, driving, meat consumption just to name a few). So why is it that when disabled people say “hey, that’s an awesome thing for a lot of people to do but not one that we can do” it suddenly becomes the end all be all of environmentalism? Could it be…ableism?

To top it all off, the whole idea of the straw ban is shoving responsibility to individuals whose impact on the environment is significantly smaller than industry. While it’s great to take personal responsibility when we can, 71% of global emissions come from a mere 100 companies. Maybe those folks could be taking a little bit more responsibility. Maybe huge industries are in a better position to make a sacrifice than the disabled community. Maybe, just maybe, we’re way more willing to throw disabled people under the bus because as a whole, society thinks it’s ok for disabled people to live lives that aren’t independent, that don’t give them access to their communities, and that are merely surviving(I’ve seen this in a couple of places when people asked “how did disabled people survive before plastic straws then” and it chaps my ass because maybe we would like to do more than survive for once). This CANNOT ever be an acceptable solution to anything. Full stop.

I fully recognize that many people who are arguing for straw bans don’t consciously think “well fuck disabled people”. But there seems to be an underlying assumption that it’s ok for disabled people to live worse lives than everyone else that is built into many of the arguments I see, especially when I see language like “the needs of the many outweigh the needs of the few” or “the answer just isn’t more plastic”, as if either of those addresses the fact that disabled people NEED these straws for basic accessibility. Yes, there is a need for improving our relationship with the environment, but there are so many other ways we could work on it, why do we have to give up these very basic needs? Nothing should outweigh a person’s right to have a damn drink.

If your argument is “yeah, this is super inaccessible I guess, but too bad nothing we can do,” it’s a bad argument.

It isn’t about straws anymore. It’s about the fact that disabled folks are asked to carry this burden for society in a disproportionate way, and people are simply ok with that. Give us equal dignity and equal consideration please. It’s literally all we’re asking, and it’s definitely possible to advocate for environmentalism in ways that don’t hurt us.

A Publicly Changing Identity

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I’m pretty much an open book about myself, my identities, my diagnoses, my labels. It’s part of what happens when you keep up a blog that’s about your own experiences. You share a lot, and you share your understanding of different labels and identities as they apply to you.

I also happen to be a human whose self understanding/diagnoses/labels/identities change over time. Unsurprisingly, this is true about basically every human who has ever existed. None of us remain static.

Where this becomes an odd kind of contradiction is when you’ve written publicly about the experience of being x, then slowly come to realize that maybe you’re actually more y. Were you lying before? How do you relate to those prior writings? Should other people take you seriously anymore? What if you just change again? It can feel like it undercuts all of the insights you had, every time you connected with others through a shared identity, all the work you put into writing about the identity.

I have a lot of anxiety about being an authentic representation of the identities I claim, because like most mentally ill and disabled people, I have massive imposter syndrome about my diagnoses and am convinced that I’m not actually different or special, I’m just a lying snowflake (hey thanks assholes who keep saying shit like that). Also people are different and I don’t want to misrepresent other people’s experiences!

This is a lot of intro.

Here’s the deal: I’m not sure if I’m asexual.

I’ve been struggling with this identity since I first started thinking about claiming it. Before I even knew that asexuality was an identity, I had and enjoyed sex. I thought that I’d felt sexual attraction. I’d dated extensively. It’s just that these things never felt right or natural, and it always seemed like I was pushing myself just for other people. Gray asexual was the most affirming identity I could find. It gave me the self assurance to set boundaries, to reclaim my body, to take the break from sex that my deeply traumatized body needed (and someday I’ll tell y’all about how much trauma it’s taken because people didn’t know how to express love within boundaries). It gave me the space to realize that love and sex are separate and that I can take as much or as little time to deal with my sexuality as I need, without any expectation that I need to be providing a partner with a certain amount of sex.

It made sense as an identity and it was SO helpful as an identity for me. I would never give up what it did for me. But I don’t know if it’s right anymore. Moving past it is weird and hard, especially because I already have felt as though my sexuality is definitely not the mainstream norm, but also not really anything that fits in queer culture.

I’ve been seeing a sex therapist recently. Husband and I decided that we wanted to try to find some common ground and see how we could make compromises considering the fact that he is allosexual and I identified as asexual. And boy howdy have we unleashed some shit…

I am kinky.

I am kinky as fuck.

Sexual desire has been showing up consistently for me when I integrate kink into my life. I want sex, I think about sex, I think about my partner sexually.

Now there’s still a lot of…stuff to deal with beyond that, not the least of which is all the anxiety and trauma I have over trying to be a vanilla person for 27 years. Sexual attraction is still not something that seems to occur in any kind of spontaneous fashion for me. I still have to actively work if I want sex of any kind to be a part of my life. Do I still fall somewhere under the gray spectrum?

Where do I go from here and how do I stay responsible in my writings when I’m talking about something as uncertain and malleable as self-identity?

I both love and hate that moment when a new identity snaps into place and you’re left looking at it like “wow how did I miss this for 27 fucking years?” I love the way it feels like you’ve unlocked whole new parts of yourself. I love the feeling of reading about someone else’s experience and going YES ME TOO. But I hate the way it feels like rewriting or replacing. Was I ever ace? What was the point of reading about asexuality for five years, exploring it, trying to understand how I fit into that spectrum if I was actually just going in the wrong direction this whole time? How on earth do I explain to all the people who have read my writing about asexuality that no, actually, I’m not sorry don’t listen to me anymore, don’t pay attention to that.

On an intellectual level I fully believe that an identity is valid even if it is temporary. If someone identifies as lesbian, then goes on to identify as trans and straight, they still have the experiences of being lesbian. If they wrote or spoke about it, those words and stories still matter. It wasn’t fake or a lie, they weren’t misleading anyone.

It’s hard enough to believe those things in the personal hellscape of my own head. But doing it out loud in front of all of you? Owning that uncertainty and change? Wowsers bowsers. I just don’t know how to do it. I don’t trust myself anymore, because I keep changing my story. I feel like I’m gaslighting myself half the time because I have such a bad opinion of my own perceptions.

The best that I can do and still feel responsible is to be transparent. My identity is changing. I’m not sure what it’s changing to, or what is being left behind. But I’m here. I’m still confused. And I’m still probably not normal. Huzzah!

A List of All the Things That Normal People Can Just Do But Are Now Behaviors Because I’m Autistic

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When I was younger, I was quirky. I didn’t have a diagnosis then, and nobody noticed the myriad of small ways that I managed my sensory world, or if they did they just thought “yeah, she’s a kid, she’s particular and picky.” But then I became and adult and those quirks didn’t go away. I continued to do kiddish things because they felt nice on a sensory level.

And then I got a diagnosis of autism, and I knew that if that had been around for all of my childhood, those quirks wouldn’t have been quirks. They would have been behaviors. There would have been an explicit program introduced into my life to extinguish them. When I was “normal” they were fine, but now that I’m autistic they are signs of my difference, and when you’re disabled every sign of difference needs to disappear. That’s how you survive in the world right? Never stick out, never appear incapable, never ask for help.

This all came into sharp focus for me last month when I was talking to a parent, and as a way of explaining one of their child’s struggles they said “the moment he comes home he always wants to put on his pajamas. I think it must be a sensory thing. What do I do?” I had to look her straight in the face and say “I do that. Don’t do anything.” She looked shocked. I can fake neurotypical decently enough. When I wasn’t diagnosed, no one ever imagined that this was something I should have to change, because I was an adult and I could do whatever weird stuff I wanted to. But here was this mom, convinced that because it was a symptom of autism it was a problem and she needed advice about how to manage it.

My advice? Let it be unless it’s hurting someone. So without further ado, here are all the things that would have been seen as problem behaviors to be extinguished if I were diagnosed as a child.

-Wearing a onesie on a regular basis, sometimes in public
-Chewing on things, all the things, including jewelry that I have specifically bought to chew on
-Having very specific dietary requirements that limit what I will eat (I will never eat fish, have a gag reflex every time I come near tofu, prefer to eat chicken nuggets as often as possible, and typically don’t cook beyond “press the button on the microwave”)
-Eating food that’s undercooked, specifically grains and sometimes raw pasta
-Stimming! I twist back and forth to crack my ankles when I’m standing, or sometimes roll onto the sides of my feet to stretch my legs out. I chew on my lips semi constantly, and when I was a kid I chewed on my hair.
-I will not talk on the phone unless it’s an emergency. I don’t care if it’s considered rude, I have such major anxiety.
-I grind my teeth, pinch myself, or dig my fingers into my arms when I’m upset.
-I lose verbal ability when I’m deeply upset and sometimes will use text instead.
-I periodically will sleep for 15+ hours at a time.
-I use my phone when socializing to manage anxiety (this was just seen as super rude for a long time, but no one told me they were going to use therapy to make me stop).
-I don’t sit upright in chairs unless I’m at work. No seriously, I slide down into them and turn into a weird little ball.
-I become obsessively interested in things and will engage in them for hours and hours to the point of almost hating them (video games, or a particular movie or TV series). Netflix binges aren’t seen as a symptom for most people.
-I wore two watches as a kid. No reason, I just liked it.

A lot of these are things that I KNOW neurotypical people do. But you add enough of them together and suddenly all of them are problems, because now you’re autistic and you can’t do anything that might be weird, or that might be because of sensory sensitivities/executive dysfunction/social issues. Why are autistics held to a higher standard than NTs? I might hazard a guess of ableism, but what do I know? I’m an autistic who still has all these negative behaviors.

How to Support Your Suicidal Friend

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Content notice: I’m going to discuss suicidality quite candidly, and make some harm reduction suggestions that some people might not agree with. I strongly recommend that anyone who is feeling suicidal see a mental health professional.

If you are lucky, you will never have a friend who expresses to you that they are feeling suicidal because none of your friends will be suicidal. However odds are that you will know someone who will struggle with suicidality at some point in their lives, and in my experience having people who are committed to their relationship with you can make all the difference. Unfortunately, it’s really easy to be really unhelpful when someone is experiencing suicidality and every person feels differently about what is helpful and what is really frustrating and downright negative. Beyond that, the moment you hear a friend say “I want to die” you tend to get hit with a wave of panic and terror that can leave you feeling completely lost about how to proceed.

Deep breath. Let’s prepare for this moment before it happens, together. Now I should note that I am not a mental health professional nor can I speak for EVERY person who has ever been suicidal, but I do have personal experience with what is helpful for me, I have been a support person for other suicidal individuals before, and I crowdsource a lot among my friends with these experiences and I can give you some information on generally what IS helpful and what is NOT helpful. Your mileage may vary, and I always recommend doing your best to suss out which particulars are best for the specific person you’re trying to help.

Let’s start with some of the big no nos. These are a little easier to find on the interwebs:

  1. Other people have it worse.
    You know what, everyone who says this can go suck an egg. Of course other people have it worse. That’s not the point. All suffering is real and valid, and whether or not there are other people who can survive worse is completely irrelevant to whether I can survive this or want to survive this. We all have different limits and other people’s lives are not important in a conversation about MY life and how I feel about it.
  2. Suicide is cowardly/selfish.
    Ah yes, the best way to help someone who is already feeling so awful about themselves that they want to die is to increase their level of shame and guilt. Wait no, the opposite of that. It is not selfish to want an end to pain, it is not cowardly to feel that you’ve reached your breaking point. If you’ve never been there you can fuck right off.
  3. You just want attention.
    So what? No really. Why is it bad to want attention? Every human needs attention or we become isolated and sad. Now it’s likely that the person doesn’t actually want attention, but even if they did, if they’re in the amount of pain that they’re considering suicide don’t they need some attention? If a person had a broken leg and kept yelling “someone help me” they would be asking for attention too, but we understand that they need it to help them manage a problem. Why is mental health any different?
  4. Just get outside more/do yoga/use essential oils/etc.
    Look if someone has reached the point of suicide you better believe that they have already tried 99% of everything you’re going to suggest and it hasn’t worked. This kind of response to someone who is at the end of their rope implies they should just be trying harder, and it’s incredibly condescending when you (person who doesn’t feel this way) thinks you know better what to do than the person who is actually living the experience.
  5. It’ll be better tomorrow/this is temporary.
    For some people this kind of reminder is somewhat helpful, but typically when you’re thinking of suicide these feelings aren’t some kind of fleeting thing. They’ve been around for a while. It probably WON’T be better tomorrow and suggesting that the problem will just fix itself seems absurd when you’re in the middle of pain that feels neverending.

Now if you’re a reasonably empathetic person who has spent any time around mental illness a lot of those won’t be too out of left field. Where things become a little bit more challenging is when you’re trying to come up with GOOD ideas of what to say. These are the things that have typically been more helpful to me when I was in an awful place.

  1. I’m here for you, and I’m not leaving.
    One of the important things you can do is demonstrate that you care about the person. Your time and attention are the most valuable things you can give to someone who feels that they are worthless/unwanted/alone. If they try to do the whole “oh you don’t need to, I’m just a burden, it’s not a big deal” then insist that you would like to stay.
  2. Don’t ask open ended questions.
    Every person will have different needs when they’re in a crisis situation, so I can’t tell you “stay close to them” or “hug them” or any other specific suggestions for how to perk them up. But what I can say is that when you’re in a crisis point making choices is very hard and it can be incredibly hard to think of things that sound like they’d be better. I like to offer either two options: do you want me to stay here or go elsewhere and text you? Or else make a suggestion and see if it’s accepted: I’d like to make you some food. Is that ok? Don’t be discouraged if they say no to a lot of things. Oftentimes nothing sounds good. Sometimes you may just have to try something and if they reject it, that’s ok (make food, put it in front of them, see if it gets eaten). When you’re trying to help someone who is suicidal think of yourself as a caretaker. They may need help with things you don’t expect. Accept that level of responsibility for the time you’re helping. Accept that it’s not about you.
  3. Literally the thing I will say for every mental health problem: deal with the basics first.
    If possible, check in with your person to see if they have eaten, slept, moved their body, taken medications, showered, or done the other basic human tasks that make your body feel functional. If they have not, try to make those things happen. Bring them food, bring them their meds, walk down the block with them. Whenever possible, do the thing with them. That might even mean going to a therapy appointment with them. Having another body there can be what it takes to get past the inertia of depression.
  4. Thank you for telling me.
    We don’t talk about suicide. Like at all. It’s considered shameful and taboo and bad. It can be scary for someone who discloses. Don’t be infantilizing or weird about it, but let them know you appreciate that they let you in and shared a really vulnerable thing with you. It shows a huge amount of trust, and it’s very brave. You can use that as an opportunity to remind them of their own abilities: not everyone can break past the fear and share. This is also a great opportunity to validate what they’re feeling: yes, it does suck and you’re sorry that they have to go through it. It’s hard and nasty and painful. It’s also surmountable.
  5. Tell me what’s going on/what you’re feeling/what the thoughts sound like.
    Suicidality comes in a lot of flavors. Some people feel that they are a burden. Some people feel that no one cares about them. Sometimes a specific event has triggered it. Let them vent and validate all those feelings. Learn more about where they’re coming from. Don’t argue, because Suicidal Brain is not logical, but you may be able to give them some reminders (if they say “no one loves me” you can be like “ah yes but here I am and yes I do and you don’t get to tell me I don’t. I will make you a sign that says I love you. I know your brain doesn’t believe it, but try to trust me).
  6. Be proactive and honest.
    If you find out that a friend is in this kind of a place, don’t wait for them to reach out to you. Follow up a day after you’ve had a conversation. Check in to see how they’re doing. Ask them to do things. You are going to have to drive the relationship right now and that commitment could be their lifeline. Additionally, people who are on the brink often have a high bullshit meter: we often suspect others of lying to us to make us feel better. Be sincere. Don’t say things you don’t mean. Obviously you care about this person because you are doing the work to show up. Focus on the things that you love about them.

Of course I will recommend that a person who is suicidal see a professional. Lots of people have legitimate reasons for being suspicious of professionals, and I understand that, but it can be helpful for many. I can’t personally recommend calling 911 because of the horrible experiences I’ve had and that I’ve heard of from others.

Do you have additional suggestions? Post in comments!

 

Why Jake and Amy Subvert Tropes

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CN: Brooklyn 99 spoilers

There’s a really common trope in TV shows and movies of the guy and the girl who hate each other to begin with but over time come to realize that they actually love each other and all the fighting that they did was just because they had so much CHEMISTRY and PASSION (or something). It’s a really common will they/won’t they scenario because you can see early on that they’ve got some kind of interest in each other, but it’s negative so there’s conflict. Easy way for writers to build plots.

Unfortunately it’s also kind of a shitty trope because it reinforces the idea that being mean is a way to express affection, and that as long as someone comes around and says “hey I love you” it doesn’t matter if they treated you like crap for a really long time. These are the kinds of tactics that abusers use to keep their victims around, and they’re also just really common ways for people to treat each other poorly. When we see them played out on our screens, we learn that it’s ok or normal, and we simply get used to the idea that that’s how you treat people.

On the flip side, a healthy, happy relationship does not good TV make. Plots require conflict. So how does one show an interesting progression in a relationship without making it shitty? How do you show people teaching each other and growing/changing because of each other without it being a crappy “let’s fix each other” plotline? How do you start with some conflict and grow into a beautiful, loving relationship?

Let me introduce you to Brooklyn 99.

There are many reasons that I love the way Brooklyn 99 takes classic TV tropes and subverts them, but perhaps my favorite one is the relationship between Jake Peralta, the main character, and Amy Santiago, my soulmate and true love. When we first meet Jake and Amy, we are introduced to them as rival cops who have a bet to see who can arrest the most people in a year. This is the classic set up for a “two people hate each other until they love each other”, especially when paired with the fact that Amy is the classic uptight woman and Jake is the classic break the rules playboy. Of course he’ll whittle away at her need to be in control until she finally HAS to go on a date with him (set up in episode one as part of their bet) and realizes she should just have fun and be more like him.

But that’s not really how it goes down, despite the fact that the show cues us to start running our scripts for those tropes.

Instead, Jake and Amy are just really good friends for multiple years. Sure, they banter, but it’s not actually mean, and consistently for the first two seasons of the show, they act as very good partners to each other. Yes, they are competitive, but instead of using that to actually get in each other’s way, they each use it as a reason to be better cops. When it comes down to it, they have a solid relationship from day one, as solid as Jake’s relationship with Terry or Rosa. And starting from a space where they clearly respect each other makes all the difference in the world for this trope.

For example, every slow burn, will they/won’t they has a time of denial, which is true of Jake and Amy. It crops up particularly when Amy starts dating Teddy and Jake begins to act jealous. But where many characters start to insult or badmouth their eventual love interest, that never happens. Another classic possibility would be interfering with Amy’s current relationship, but Jake also never shows interest in sabotaging Amy if she’s truly happy, and even works really hard to help her keep her relationship together when he inadvertently screws up by inviting Teddy to a bed and breakfast with her.

When Amy and Teddy do eventually break up and Amy decides that she doesn’t want to date cops anymore, Jake doesn’t feel that it’s his job to change her mind or convince her. He respects her decision.

These are two characters who respect each other, even if they do move from rivals to lovers, and it’s so refreshing to experience. Once they start dating, it would be all too easy for the show to fall into the “they need to change in order to be together” trap. Amy would have to relax and become less controlling, Jake would need to give up his goofy ways. Amazingly, that never happens. Instead, they sometimes have honest moments of irritation but most of the time express affection for their partner’s quirks, which is how love should be.

When Jake says that he spent all of his time in prison planning his Halloween heist (and also thinking about Amy) she just responds with “good save babe” because it doesn’t upset her, she thinks his intensity is fun. When Amy pulls out the most gigantic wedding binder, Jake just smiles and jumps in on the next set of tasks. They complement each other, as evidenced clearly in the wedding episode: Amy has planned everything and knows just how each moment is supposed to go, while Jake manages the last minute fiascos that happen in life. How have they learned to work so seamlessly together? Oh yeah, but accepting each other’s strengths and growing together as friends and partners for five years.

The final point I’d want to make about how this relationship breaks stereotypes is that Jake and Amy aren’t stagnant. They do change each other, and they do grow in their relationship. But not because the other person demands it or because they aren’t accepted as they are: they grow because they learn from each other and find the benefits in their significant other’s traits. Jake gives up his apartment because he knows it would stress Amy out to live there, and he loves her. Amy runs into the freezing ocean to get Holt and Rosa when Jake is in danger and needs backup. They face fears like commitment and family, and come out still themselves but better.

Other shows could definitely learn something about how to create tension without turning people into assholes and creating unhealthy relationship patterns.

You Don’t Know What Mental Illness Looks Like When It Matures

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I’ve been seeing a sentiment floating around a lot lately and it’s starting to get under my skin: mental illness is a health problem for young people. This isn’t strictly untrue: suicide is the second leading cause of death for 10-24 year olds. There are some studies that indicate depression rates are increasing in young adults. The problem is less about truth and more about scope: it’s easy to imagine that depression, anxiety, and other common mental health problems are things that many people deal with in young adulthood, but that we outgrow.

How often do you hear people discuss mental health in regards to adults over the age of 30? I honestly can’t remember the last time I’ve heard one. It’s a young person’s problem in our collective consciousness. Perhaps even more acute in my mind is that even when we do talk about mental illness in adults, we talk about it as if they were still young. What does that mean? It means that many people don’t understand that if someone has had mental illness for their whole life, their relationship with it changes. Even if they still struggle, they learn new tools and gain understanding. It’s not the same as the first wave of depression that knocks you on your ass and leaves you wondering how you’ll ever stand again.

I don’t want to downplay how serious longterm mental illness can be, because I have lived with it for my entire adult life and boy howdy is it balls, but when you’re reaching year 10 or 20, the flavor is completely different and the support that you need is completely different. Most often when we hear about mental illness we hear about people who are flailing and helpless, people who act out through negative behaviors. We hear about attention seeking behavior, or sometimes manipulation. We often hear about people who don’t necessarily want to accept help or who don’t know what is helpful.

The image that many of us have is someone who lies around looking waifish and staring out windows mournfully. In some people’s minds you can SEE depression, like that silly black cloud that follows people around in antidepressant commercials. But it’s something your’e ashamed of that you hide because it’s embarrassing and you don’t understand it.

That’s an incredibly youthful experience of mental illness. It’s one that finds the experience unfamiliar and difficult to navigate. By the time you’ve reached even 25 or 30, if you have received any kind of treatment for your mental illness or found any kind of community, you likely feel some familiarity with your mental illness. It’s not unexpected. You can often predict certain patterns. More often than not I see adults with mental illness being very frank about their mental illness. They will say straight out “I get depressed in the winter,” rather than trying to dance around anything.

On the flip side, we often get much better at masking as we age. We’ve had to function with mental illness for long enough that we know how to keep going to our jobs and leaving the house even when we feel like death on the inside. And sometimes, if we’re lucky, we’ve got some skills and strategies that we know to pull out when things get bad.

Example: when I was younger and I started to feel like death, I wouldn’t know what to do and I’d often end up leaning into the feeling, lying in bed, writing emo poetry, and feeling worse. Now when I feel like death, I put on footie pajamas, get my weighted blanket, make a cup of tea, and play a video game. If that doesn’t work, I text a friend and talk through things. If that doesn’t work I make myself leave the house. If that doesn’t work I try to work out a little bit.

Perhaps most important, most of us become more self aware. I’ve seen a lot of 17 year olds post things they thought were semi-subtle social media posts indicating that they were suicidal. Looking back, there’s nothing subtle about them. Now most of the people my age either don’t post melodramatic statuses or they’re very matter of fact about it and include notes on how others could help or what they’re doing. It doesn’t feel nearly as romantic or interesting anymore. It’s about as exciting as sharing that you need someone to help you move (and just as enticing to all your friends).

The experience of living with mental illness over time doesn’t mean that you will always be better at dealing with it. But it does mean you understand it better, you feel more comfortable with it, and you’ve probably got more ideas of things to try to feel better. I would love to see more representation of the person who has grown comfortably into a mentally ill adult, who can make jokes about the fact that they immediately think they’re going to be fired if their boss goes into a closed door meeting (yes this is me), who has lists of people to call and skills to use, and who still is mentally ill. It’s completely different, but an experience that many people grow into over time.

I’d love to have more understanding that the blase attitude many of us have about our mental illness comes from living with it day in, day out, for years and years. It gets boring after a while. I am bored with being mentally ill. That is what it means to grow up with it.

Passing Means Always Passing: How Disability Systems Punish Functionality

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I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.

I can generally pass for neurotypical. I can be independent. Until I can’t.

There are two ways that this comes back to bite me in the ass: one is in terms of the services and supports I might want, and one is in terms of the personal blowback that comes from being disabled and neurodivergent. These problems appear either when I start to experience burnout from pushing myself to be functional for so long, or when stresses start to add up and I can’t keep up anymore.

There is literally no system in place to allow temporary respite for people with disabilities. There is absolutely respite care for families and caregivers, but there’s no system that will say to me “sure, take a vacation come stay at this place and we’ll feed you/take care of you, and we’ll cover your lost wages so that you can actually afford to take this break”. That sounds preposterous to me even typing it, because I have been so conditioned to think that I don’t deserve something like that, despite the fact that it would completely change my life for the better, make me more productive, more stable, more happy.

In order to receive services through the government, you have to prove beyond all shadow of a doubt that you are super disabled and really absolutely definitely need services or money. That means that if you are capable of holding down a job, if you make any amount of money, if you aren’t visibly disabled, you don’t get services, much less temporary services until you can get back on your feet that are easily accessible during a crisis.

Most services ask simple questions about your functioning rather than looking at how that functioning affects you. I can work, yes, but it exhausts me to the point that I sleep for 14+ hours in a go at least once a month. I can drive, yes, but it sets me on edge and gives me massive anxiety. I can call and make my own medical appointments, yes, but that’s about all I can do in a day. I have demonstrated that I can do these things, and now I’m expected to do them without any kind of repercussion to my well being because I’m “high functioning”. People don’t notice that they stack expectations very quickly: once you’ve demonstrated you can do one thing, they expect one thing AND.

If you can fake it for some amount of time, the system is not interested in the burnout or the toll it takes. It is not interested in prevention. It barely has the funding to help those who are already in crisis, much less those of us who would prefer to avoid a crisis.

On top of all of that, when you can mask for a while people start to think that that’s who you really are, or that it doesn’t affect you.¬†We’re all so used to hiding our disabilities that when we can’t, it can result in all the ableism we’ve hidden from coming crashing down on us. Jobs assume that if you could complete the task yesterday you should be able to complete it today (and when you can’t you get consequences, or may even lose the job). Friends and family don’t understand why sometimes you can socialize and other times you can’t. It can look like you’re just an asshole if you work very hard to maintain relationships most of the time, but when you get burnt out you stop returning texts and phone calls or forget to reach out, miss a birthday, can’t be supportive.

Underlying all of these problems is the lack of recognition that “functioning” requires lots of other supportive activities: work requires showering and eating and transportation and sure maybe I can do one piece of that but not all of it. Maybe I can afford to maintain a home but I don’t have the spoons to keep it up and no one is around to help with that. Passing means being able to do all of the tiny things that keep up the facade around whatever you do: if you want to pass at work you have to pass enough to go out with coworkers, enough to bus or drive, enough to pack a lunch.

This is horrific for people like me. I can function well enough for long stretches, but one of the most common symptoms of autism in people like me (and particularly women) is exhaustion and fatigue. I am tired all the time. When I have a major event it takes me weeks to recuperate (case in point, my work’s conference and gala were two weeks ago and I’m barely starting to feel human again). If we’re lucky we find jobs and people who understand that our energy and functioning fluctuate, people who will pick up the slack when we’re struggling to get from bed to the car to work. But if we’re not lucky? We push ourselves until we can’t move, we become immensely depressed, we don’t understand what’s wrong with us because shouldn’t we be able to do all the things everyone else is able to do?

There are no supports when you can pass some of the time. It sucks.