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.

When SAD Isn’t Just the Winter Blues

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I love spring. I hate spring. I have a lot of feelings during spring.

Last night I took a walk with my skin free to the air for the first time since November. It’s like breathing again. Sometimes it feels like I’m drowning in it. I want to run. I want to disappear. I cry. I drink. I get tattoos. I shave my head.

Spring is really, really hard for me. I feel uncomfortable in my body and bored with my surroundings. Spring is when I get tattoos or shave my head or break up or make rash decisions. It’s almost a manic feeling, but tinged with a deep, deep melancholy. I guess that’s what happens when you’re an autistic who has a strong pull towards spontaneity but also goes into a panicked shock when a plan changes.

You might be surprised to hear that these symptoms reasonably could fall under the label of Seasonal Affective Disorder. From Mayo Clinic: “Seasonal affective disorder (SAD) is a type of depression that’s related to changes in seasons — SAD begins and ends at about the same times every year.”

Most people experience heightened symptoms of depression in the winter, and that is the most common type of SAD (low mood, low energy, nasty depression during the fall and winter months). However there are some folks who experience consistent low mood at other times of the year. I personally get SAD in the winter, and then this weird, nostalgic, anxious, mess of dissatisfaction during spring. Winter is a time of hibernation, when I can barely bring myself to move. Spring is the time when I have energy and I want to use that energy to do bad things to myself.

It can be so frustrating to have these patterns of emotion without recognition (from yourself or others) that it could be a perfectly natural seasonal issue, and that you can use the same skills and techniques that others use to deal with them. If you regularly feel depressed in the winter, most people can identify it as seasonal. Other times? Not so much.

Especially when it comes to spring and summer it can seem like everyone else is excited and loving the season, while you’re stuck somewhere else, isolated.

So today’s post (short though it is, I need to ease back into this blogging thing) is a reminder that SAD can be at any time of the year. Different people are affected differently. Your history can affect it (dates like the death of a loved one can be particularly difficult), or our current life (I always have a major conference at the end of April that leaves me drained and struggling).

No matter how your depression manifests, it can be helpful to look for patterns and start to put coping mechanisms in place preemptively. If you know summer is bad, plan your self care more actively leading into summer. If you know winter is bad, communicate with others and ask them to help you get out and about.

As I’m trying to pick back up after a very busy April, I’m trying to remember that spring is hard for me, and this spring is feeling particularly hard for me. But summer will be here soon, and the forwards looking nostalgia will dissipate, and I will someday feel functional again. That is the nice part of seasonal affective disorders: it will end. It will get easier. You can get through it

Hiatus

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Sorry for being so quiet lately! April is a really tough month for me, and because of that I won’t be posting new content until May. Thanks for being understanding 🙂

When Mental Illness Makes You a Hypocrite

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I do a lot of things that I tell other people they shouldn’t do. Basically every day. I tell other people they shouldn’t skip meals or think of food as good and bad (food is not moral). But here I am, skipping breakfast literally every day and judging the hell out of my own food. It’s basically the most common mental illness experience as far as I can understand: we all think we’re uniquely bad in some way and deserve the cruelty we heap on ourselves in a way that no one else ever could.

I’ve been feeling it a lot lately though because mental illness also limits my ability to follow through on my values. The March for Our Lives was this weekend, and it’s something that I care a lot about. I believe deeply in the importance of public demonstrations, and of coming together when you have a cause. I didn’t go. I wasn’t busy. I could have gone, quite easily in fact. But I didn’t. The thought of it made me anxious and exhausted. The marches I have been to in the past knocked me out for a day or two afterwards, and honestly I have too much shit happening right now to manage that.

I feel awful about it.

If one of my friends came to me and said they feel like they aren’t doing enough for the movements they care about because they don’t go to marches and call their representatives, I’d remind them that there are a thousand ways to make a difference. Writing, talking to friends, supporting those people who are on the front lines, volunteering, working at an organization that supports the community, pushing for accessibility in events and spaces…these are all things that I do. I’d tell them that all of these things are important, and that staying functional and happy as an oppressed person is honestly job #1.

But I can’t listen to it when it comes to me. I’m special. I should be able to do more than other people, or do things that make me miserable because of…reasons.

It’s doubly frustrating because it feels like no matter what I do I betray my values in some way: go to a March, push myself too hard, feel like shit, and betray my strong value that each person has something to bring to social justice movements and it doesn’t have to be marching in the streets, and it’s ok to recognize your own limits. Or, don’t go, and feel like I’m betraying the movements I care about.

It’s amazing how many of these instances come up. I think we all have places where we have to compromise our values because we’re human and fallible and we can’t do all the things that we would like to or feel we should do. I can’t be vegan because I would actually literally die due to my sensory sensitivities+eating disorder. I can’t call legislators because it sets off my anxiety and I am a wreck before and after. I’m really awful at setting boundaries despite telling other people that they’re super healthy (because hey when you’re depressed your brain tells you any boundaries will make people leave you forever).

There are a lot of things that frustrate me about having mental illness/disability. But the worst is unquestionably that it impacts my ability to be a good person.

And yet.

Mental illness is not an excuse to be a bad person. But sometimes it’s definitely an excuse to not do all of the hundreds of things you’d like to do to be a good person. And I have to remind myself that there’s a difference between being a bad person and not being the best person (heyo look there’s my old friend black and white thinking). It’s easy to think that you’re making excuses for inappropriate behavior when you try to accommodate your disability. It’s easy to think you’ll slide into treating people badly because well I’m mentally ill and it’s just how I am. It’s easy to think only anxiety will keep you vigilant.

Sometimes I get so wrapped up in myself that I’m convinced the line between “using my disability as an excuse to be a shithead” and “accommodating my disability” is blurry and grey and hard to understand. I don’t think that’s actually true. Sure, there are some edge cases like “how often can I cancel before I really am a bad friend?”. But “should I choose not to do this thing that’s really hard for me and instead focus on things that use my talents”? That’s not one of them.

So sure, I might feel like a hypocrite or worry that I’m betraying my values, and even feel like I’m ignoring my own advice by even having those feelings (seriously, anxious people can feel anxious about anything). But I’d know if I were truly violating my own ethics. One of the hardest things to do when you’re mentally ill is trust your own assessment of a situation. But our own assessments are so important when it comes to our own values. I’m going to start practicing; I am living up to my values to the best of my ability. And that’s good enough, no matter what anyone else says.

 

Thinking About Disability Advocacy When Planning End of Life Care

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As life is wont to be, things are complicated for me right now. Due to a variety of low key health things, my parents are redoing their wills/power of attorney/etc. and have given my brother and I the gift of having ours done as well.

So here I am, a 27 year old disability advocate, thinking about what I want out of end of life care, and I’m finding that I’m suddenly being asked in a very serious way: do I believe it when I say that I believe people with significant disabilities can live good, worthwhile lives. Do I want to be kept alive with significant brain damage? What about paralysis or physical loss of functioning? My gut says no, but when I stop and think about it, the disability community has told me that those lives are just as valuable as my own. Can I truly internalize that?

Add on top of that that I already manage a chronic condition, that I’m low key suicidal like 99% of the time (I’m fine, it’s a passive thing), and that I’m frankly lukewarm about life overall, and I find myself concerned and confused.

Is it ok for me to think that MY life wouldn’t be great and that I would want to die if I lost any quality of life, while still maintaining that other people in similar situations could have perfectly great quality of life? How does this play into the very real problem of disabled people being killed with the rationale “It’s better for them”? There’s some image that it’s freedom to die if you’re disabled (which was thrown into sharp relief for me this week after Stephen Hawking died and people actually literally said those words, drew comics of them, and implied that it was good he wasn’t suffering anymore).

I’m chewing on a lot of this, and I can’t say that I have answers, but it’s interesting to notice the places where your abstract values require concrete commitment in your own life, and the way that’s completely different. I believe that disabled people can have fulfilling, good lives because they have told me so. But do I trust them enough to say that I’d live that life if something were to happen to me?

Part of the challenge with writing a medical directive is that you’re trying to imagine every contingency. I have no idea what conditions I might be addressing. And when you’re writing the directive, you’re assuming that you would be incapable of making your own decisions, which already assumes that things are pretty nasty. There’s probably a significant difference between the types of things that would cause me to require ongoing medical treatment to stay alive AND would render me incapable of giving my own consent vs. ongoing disability.

I’m currently leaning towards saying that I would prefer minimal effort be made to keep me alive. I have already experienced years of life quality that I will not live through again. I have promised myself that if I ever feel that way for months on end again, I will ensure that it stops, however I can. I live my life protecting myself from potential pain of all kinds. I firmly believe that people have the right to not live anymore, just as they have the right to live.

Does saying “I don’t want that” mean “other people also shouldn’t want that”? Obviously no. Is it different when it’s life and death? Maybe. Does saying “I would rather die than live like that” mean other people shouldn’t do it…maybe not. I can very clearly say that I would rather die than go back to the college I went to. I have nightmares about it regularly. But there are other people who have lived there and been immensely happy.

One of the things that is becoming apparent to me as I speak to more people about disability is that the experience of it is individual. Some people responded to Stephen Hawking’s death by saying “I would kill to be out of my wheelchair”. Others say that their wheelchair is freedom. When you get the choice, or at least a little bit of choice, it makes sense that there isn’t a right or wrong answer, and that the deeply personal choices you make about end of life care aren’t (necessarily) some kind of political statement about the value of life.

But even so, I want to be deeply and carefully aware of how my particular preferences are informed by a culture that says disabled lives aren’t worth living, and I want to question that narrative as often as possible. In some ways I am a coward for knowing that more often than not I cannot tolerate life. But I’m also a realist, and I don’t think it does anyone justice to shy away from the times that life is truly suffering. As always, this is the dichotomy of disability: I am worthy. I am in pain.

Uncovering The Implications of Autism

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I’ve been diagnosed with autism for about 2 years now. It feels like a long time to me, the longest any diagnosis has ever felt “right”. It’s long enough that I’ve started to feel like I get all the autism things about myself. For a while after the diagnosis I would regularly have moments of realizing “oh shit that’s autism!” and having pieces fall into place. Each time it happened, it helped me understand myself, navigate when I was struggling, or explain myself better to other people.

But after a while that stops happening as often. You feel like you understand yourself. The diagnosis fits, time to live life. Of course if that were the case I wouldn’t be writing right now, so you know there’s more to the story. A diagnosis like autism is something that you will never stop understanding. You’ll look back at things you did and behaviors you thought everybody did, and realize nope. That’s an autism exclusive.

I’ve had a few of those moments recently, and I want to talk about how hard it can be to realize that autism sometimes makes you an asshole, or affects the people around you in ways you didn’t expect. How do you parse what’s you and what’s the diagnosis? How do you ask for accommodations without expecting people to cater to shitty behavior?

These aren’t new questions, but it’s something that all neurodivergent people have to grapple with over and over as we find new ways that our brains are assholes. Sometimes they’re assholes to us, and sometimes they’re assholes to other people.

Let’s take a recent example for me. I’ve known about the concept of theory of mind for a while, and known that sometimes I struggle with it. But for some reason it never really hit me where I struggle with it until last week. I’ve had a number of people give me feedback in my life that I share too much information about others: there was that time I went to an “Undie Run” and took pictures that I posted online without people’s permission. There’s the fact that every person I’ve dated, I’ve shared our fights/their issues/our small disagreements with friends and family with nary a thought for whether or not that’s shareable information.

Until last week, when I was in a therapy session with my husband and he mentioned that it’s something he finds really tough. “Sometimes you don’t think about the fact that what you tell others will change how they view me or interact with me,” he told me. And I don’t know why, maybe it was the therapist sitting across the room from us, but a light bulb went on over my head and suddenly I was in the perspective of all those people whose privacy I had violated and I felt AWFUL.

I realized that one of the challenges with autism is that you don’t always know what you don’t know (cliche, I know, but true). I know a lot about autism. I spend my life immersed in it. I thought I knew what theory of mind was and had identified all the places that it affects me. But it took a very deliberate effort on the part of my spouse to really help me see where this was affecting him, our relationship, and me.

It’s fucking weird to have those moments. Something you thought was just normal, or a difference of opinion, or just basic human variation starts to look more…pathological. You wonder where you end and the diagnosis begins, what can be attributed to you as a person (your flaws, your preferences, whatever), and what makes sense to label as “autism”. And it’s this awful moment of realization that you’ve been doing something “wrong” your whole life. You can get paranoid that you’ll never be aware enough, never know how different you are, or all the ways that people judge you or find you weird or off putting or bad.

At the same time, it’s a reminder of growth. Ok that sounds corny. But it’s a reminder that I am never “done” processing my diagnosis, and I’m never done learning new coping skills and ways to thrive in a world that doesn’t fully make sense to me. It’s easy when you keep having these realizations over time to feel like you can’t trust your identity or your perception of the world, to feel like your sense of self is always changing or as if you’ll never fully understand your diagnosis.

Being unquestionably different from typical people and having a brain that isn’t fully understood not only by yourself but also by medical professionals means that you’re always working. Yes, it’s exhausting. But it’s also opportunities to improve. Every realization, every piece that falls into place is something that I don’t have to worry about in the ways that made me so anxious when I was younger and was always concerned I was hurting people. In the example above, I suddenly have a way to improve my relationship right at my fingertips. I know how to move forward.

Sometimes finding the balance of accommodations is as simple as identifying what the problem is, like in this case. It will take me practice to exercise that “theory of mind” part of my brain, and to get in the habit of imagining how my actions will affect others. That’s where the accommodation comes into place: my husband knows that it isn’t a desire to hurt him, but simply something that doesn’t come naturally to me. He’ll give me feedback, be more understanding when I make mistakes, and help remind me when I need that.

It’s easy to think when you get a diagnosis that you’ll do all of this at once. That’s just impossible, not only because you’d have to do SO MUCH WORK in one go, but also because only over time do you notice the places where your life needs these kinds of accommodations. You also start to realize that the diagnosis is a helpful tool for framing out problems like this. Before autism, I might have just gotten very frustrated with myself and wondered why I screw up so much. With the understanding of autism, I know what theory of mind is and can understand why it isn’t intuitive to me. I can understand that what I need to do is consciously ask people, rather than try to intuit. It gives me more information, whether or not this particular habit is “autism” or not. That’s why we diagnose: to move forward. That process never stops. What have you unearthed about yourself lately?

Fuck You For Wishing You Could Fix Your Child

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The first draft that I wrote of this post was not fit for general consumption. It was angry. It was heartbroken. I furiously typed out a thousand words in fifteen minutes with tears streaming down my face in grief and fear because I didn’t know how to respond to another autism parent acting as if autism is the enemy.

But I gave it a day or two, and I can engage with the topic again, and so here we are. I think it’s incredibly important to genuinely engage with the fear that autism parents feel without letting them say damaging things, and that is what I aim to do here.

Here’s what I want to push back on: autism parents who in the name of being honest say that they wish their kid could be fixed, that they had to give up on dreams of a certain career or of their child graduating college or high school, that they are giving up hope, or that quality of life just isn’t enough. This post was inspired by one video in particular, but I’ve heard so many parents use the same phrases, or talk about how their child will never do x and that no one else will understand that. Particularly that autistics like me won’t understand that.

My autism is not visible. It’s not “severe”. Many people don’t even believe I am autistic. They think that I don’t get what it’s like because I have a job and I own a house and I’m married. They think that the pain they feel when looking at their severe kid is justified because they’ve had to give up dreams of raising a lawyer or a doctor, of it ever being easy, of being normal.

And honestly I’m so fucking tired. I’m so fucking tired of being looked at like I don’t belong in the disability community because I don’t wear it on my sleeve. And I’m so fucking tired of parents thinking that I’m better than their children because I’ve checked some series of shitty boxes.

When a parent says that they have to give up on the hope of a certain milestone what I hear is that they wish their kid could fake it like I can, and what they don’t understand is that they are hoping their kid can be in pain like I am. When they say that quality of life isn’t enough, they are prioritizing their own need to be normal or to have certain wishes fulfilled over the happiness of their child.

What I want all of the parents who say those things to know is that I have reached the milestones. I’ve hit the goals that you dream about for your parents. And the way I did it was through pain. It was by trying not to be autistic. It’s hard to explain exactly WHY all the things that went wrong did, but here is how I felt while I was graduating from high school and getting jobs and going to college.

I spent seven years of my life actively wanting to die.

I am not exaggerating.

Imagine this for me. Imagine that you wake up. You cut yourself. You refuse breakfast. You go to class. Everything hurts. It hurts to not cry for the hour that you’re in class until you can escape somewhere and curl up in the fetal position and wrack with sobs. You refuse lunch. You try to make your body work out even though it hurts, it all hurts, it hurts all the time. You cry like other people don’t, like it feels as if your throat is trying to pull itself out of your body. You get shooting pains down your arm. You wonder when it will happen, when your heart will give out, when the razor will go too deep. You hope it’s soon. You don’t know if you can make it another day. Just staying awake feels like the most gargantuan task in the world. EVERY. SECOND. Every second feels like the worst emotional pain you’ve ever felt, and it’s a constant desperation to just end it.

Not imagine that because you’re in college and passing your classes everyone thinks your quality of life is perfectly fine. You can speak. You can bathe yourself. You can clothe yourself. You’ve hit the milestones. You’re doing everything you’re supposed to do! You’re the autistic all those autism moms think about when they wish and dream.

Except that being alive is the worst thing that you can imagine. You try not to rip your skin off. You try not to stick your fingers down your throat every night. And this goes on for months and months and years, until you’re so exhausted that you don’t know how to go on. But you do because you’re stubborn and you know that the rule is you don’t quit things that you’ve said you’re going to do, so you keep getting up and doing it again even though more than anything you want to die, you want to be done, you want your head to be quiet and calm and easy and you know it will never be.

I can’t say for certain that the reason my life was hell was because I was trying to have more than quality of life, but that sure as hell is my hunch.

When you say that quality of life is supposed to be enough but it’s not you’re telling me that you would rather have the kid who can go to college even if they want to die than the kid who will  need intensive supports but may be happy as a clam. And that’s fucked up. I’s so fucked up. Quality of life doesn’t come from all those damn boxes you want. Do you want a child who’s autistic and not a fucking lawyer or doctor or do you want a kid who’s fucking dead? Because that was the road I was going down until I got adequate help.

Trying to force your kid into the mold of neurotypicality is pushing them into depression and suicidality and all of the shit you should never ever want for your kid. And yes, those milestones that are so important to you? Those are asking for neurotypicality. It’s asking your kid not to be who they are.

JUST STOP. I don’t fucking care if you’re trying to be real or open or whatever fucking shit it is that convinces parents of autistic kids to have these conversations, stop saying that you wish someone would come and fix your kid because I can hear you and I know that what you want is for me not to be myself. It tells me I’m not safe around you, that I have to keep masking, that I can’t rest.

If you have to say and think those dark, hard thoughts, don’t do them on the internet where your child might one day hear them or where people just like your child will hear them. How DARE you say that you wish he could have more than quality of life?

I would trade every accomplishment I have ever had to have had any kind of quality of life for the years that I was masking. I would give up my college degree and my voice and my job if I knew that I wouldn’t ever feel that way again.

And I’m here bawling because I saw another video of another mom who wants her kid to be fixed and all I know is that even the people who compliment me in public, people I know, people who have spoken to me about how talented and accomplished I am, they don’t want me to be who I am. They don’t want to see when I meltdown and go nonverbal, they don’t want to see the scars, they don’t want to know that getting here almost killed me and it’s people like them who did it to me. They want me to keep pretending, and they want their kid to pretend too.

That isn’t any kind of support.