Hope Is Not Kumbaya, Hope is Radical

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Something that I don’t touch on very often on this blog is that I not only am an individual with autism, but I also serve other individuals with disabilities, and I work in the nonprofit field. I don’t get into nonprofit issues very often because I don’t find them that interesting and often I think that the things that consume so many people working in the nonprofit sector feel like inside baseball dependent on really boring politics. BUT.

I was at a training this morning and one of the people in the audience asked a question that resonated deeply with me. “How do I share my mission when I really just want to be snarky and tell people what’s REALLY happening?” They worked for an adoption organization, and specified,  “I don’t think we create families for kids who don’t have them. Those kids had families and we took them away because we won’t give families the support they need. I don’t want to say kumbaya we’re making everything better.”

Wowsers bowsers that was a come to Jesus moment for me and how I look at my professional life.

I have views that differ fairly significantly from the official positions of my work, but mostly that is because my work has intentionally decided to be neutral on certain issues. Working in the autism field it’s easy (so so so easy) to piss people off, and we do our best to say things that won’t upset anyone. More often than not, this ends up looking a little bit kumbaya. The people who can’t do that or who don’t want to do that either burn out or end up pushed to the extremes. It’s really, really hard to give a “real” picture of autism when autism looks vastly different for different people, when you don’t want to promote ableism, and when you want to focus on what CAN be done in a positive way.

But what really hit me this morning is that hope, in a deep and honest sense of the word, is as far from kumbaya as possible, because real hope (and I’m using the qualifier real because I don’t know of another word to denote the authenticity of what I’m trying to describe) is something that can only happen after you truly accept the situation as it is. That means opening your damn eyes, talking to the people involved, seeing what is really happening, and accepting on a deep, sad, depressing level how bad a given problem is.

Cause here’s the thing, nonprofits exist because we see a need that must be filled. We’re not here to get paid (obviously). There’s a problem and we want to solve it. So the first step of that equation is what is the problem? The problem as told by the people it affects and understood in a real, respectful, dignified way that gives them real autonomy and meaning. The problem in a way that doesn’t shy away from the underlying, systemic issues that keep perpetuating it. The problem in a way that is unflinching.

I don’t mean parents of autistic children telling horror stories of fecal smearing. I mean families and autistics telling real stories of how ableism prevents them all from getting real support and from living good, full lives. I mean stories of discrimination, stories of isolation, stories of confinement, even stories of murder.

The ability to look at all of those stories, see the common threads that create the problem known as ableism or anti autism, and to still have hope that we can make it better is something radical, strong, and powerful. It’s hard. It takes work to dig down into these real lived experiences, and it takes resilience to keep doing it, and it takes resourcefulness to dream that it could be better and imagine how it could be better.

So when she asked point blank how to be real without alienating people, that image of hope crystallized for me. That kind of hope that is unflinching and radical and bold and dreams not to run from reality but to change reality. I want to keep that hope at the heart of all that I do, both professionally and personally, because I am uninterested in the politics or in softening my message for efficacy. I want to hold close that I must be willing to hear what others have gone through in order to bring true positivity to the table: any positivity that ignores reality is trite and empty and unhelpful.

Let’s be bold and hopeful and real together friends. Happy Monday.

Share Your Executive Function Experiences

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Here’s a peek behind the curtain of my life when I’m not blogging: I’m currently studying as a LEND fellow and working on a nearly year long project about executive functioning. My dream is to combine my hand lettering and graphic design with my interest in autism to create a cool, illustrated guide to real life tips for managing executive function.

I know I’ve got some amazing readers who have used all kinds of strategies to deal with executive dysfunction, so I thought I’d send this survey out into the void and see if any of you are interested in sharing your experiences. Share as much or as little as you’d like!

Here’s the survey!

We’ll be back to our standard programming shortly!

Suffering Doesn’t Create Meaning, You Do

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Normally I’m a huge fan of Offbeat Bride and its offshoots, like Offbeat Home. Generally they’re pretty quality at providing perspectives from people of all walks of life and promoting quality, healthy ideas like good boundaries and self care. Alas, they published something today that fell into one of the awful thinking patterns that irritates me more than almost anything else: suffering is good because it makes things MEAN something.

People like to say things like “To genuinely love or be passionate for something is to suffer.” or “Suffering gives you depth and compassion.” without providing any evidence of these statements, as if just saying it makes it true. These kinds of blanket statements give us reasons not to try to reduce suffering, and make it noble or good to push yourself past reasonable limits (this article was in the context of long distance running, which is great for some people but especially when it comes to exercise I’d really like to diminish the amount we praise suffering because that shit can go south real fast).

Let me be clear: there are people who go through painful experiences, who suffer, and who do not gain compassion from it. I promise. I’ve met them. I’ve lived through certain painful experiences that honestly just made me worse because I have come out hurting and sensitive. Some people live through trauma and they end up hurt and angry, going on to hurt others. Sometimes we go through something hard and simply survive. We don’t always know how to process or create meaning out of difficult experiences, even if we want to or try to, because sometimes there is no meaning there. A bad thing just happened and that’s it.

On the other hand, sometimes we find meaning through positive experiences: some of the biggest growing moments of my life have come when I’ve been faced with compassion and kindness and felt comfortable, safe, and happy. I’ve found meaning by sitting in a room with a therapist and talking about what emotions are and what they mean. I’ve found meaning by sharing simply joys with my husband. Suffering is not REQUIRED to create meaning, nor does it necessarily create meaning.

What makes the difference is not the experience itself, but rather an individual’s response to it, which is affected by their history, the environment that they’re in now, the support they have to process the experience, and the depth of the suffering. There’s a huge difference between choosing to push your body to run a long distance and being emotionally abused for years at a time. These are both examples of suffering, but they come in completely different contexts. It concerns me deeply that people feel comfortable making blanket statements about suffering without differentiating suffering that you have decided to undergo from suffering that’s inflicted on you.

Why am I so frustrated about this? Well trite sayings about how suffering will give meaning to your life are often deployed when someone talks about their suffering and asks for help. It’s a way to ignore the responsibility we have to each other to reduce suffering. It’s a way to invalidate others when they say something sucks. This kind of logic allows us to ignore unhealthy behaviors, because suffering is good (see: eating disorders, excess exercise, etc). It’s the kind of thinking that doesn’t allow people to feel angry or hurt when others cause them suffering, instead promoting the idea that you should just grow from it, see the bright side. It’s a mentality that responds to a problem like “I’m miserable in the work that I’m doing” with “suffering gives you meaning”.

I have experienced some suffering that was under my control, the choice to push my body further or the choice to really challenge my mind, and in those cases it can be beneficial. I had support, I had the ability to end it if it became unhealthy. I have also experienced suffering that was overwhelming and outside of my control and what I learned is that I never want to experience that again and I will do everything in my power to reduce suffering.

We as humans get to choose what we do in response to suffering. Those choices are what help us to grow and create meaning. Sometimes we have the ability to choose meaning and sometimes we have to choose survival instead. But can we please, please stop glorifying suffering?

Etiology Does Not Define Us

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My latest special interest is the intersection of autism and gender, and as I’ve been reading I’ve noticed that one of the core concerns of service providers is whether gender nonconformity is CAUSED by autism or not. This is often followed up by assertions that for many autistics gender nonconformity is long lasting and thus should be treated.

I find myself mildly perplexed by the proximity of these two sentences, as if the underlying cause of a source of discomfort or identity somehow validates that identity, gives it a stamp of approval. My sense of gender is deeply entwined with my understanding of myself as autistic, but that does not make my gender less real or less important, less deserving of recognition or (if it were causing me distress) treatment. More important questions seem to me to be how intense the feelings are, if they do persist over time, how much they interfere with someone’s life, and how permanent the proposed solutions are.

This is just another example in the obsession with etiology that appears whenever we have someone who is different. Difference is ok if it’s 100% innate and you definitely can’t change it and it’s certainly not your fault because you didn’t choose it nuh uh not even a bit. If your difference came from some kind of grand a priori category handed down by God or Nature, then it is acceptable, but otherwise you’re just being different and we can’t accept it.

We see this in the way that many advocates have taken to the “born this way” language with gusto. You can’t criticize this sexuality because it’s innate, it’s natural (see: the naturalistic fallacy). We see it when people suggest that others aren’t REALLY asexual or lesbian or trans, but really they’re those things because of trauma or a medical problem or mental illness (as if those things aren’t completely real and valid reasons to have an identity). People are OBSESSED with the idea that choosing to be different could be bad, but if it’s something you’re stuck with I guess we have to accept it. But there are lots of pieces on why that kind of attitude isn’t actually super great, and how there actually would be nothing wrong at all if someone chose to be gay.

So why do we care if ASD is part of why someone feels gender dysphoria? Perhaps it’s true that people with ASD are less likely to be influenced by societal expectations of gender, and thus are less likely to conform to gender roles, so Person X is only trans because they’re autistic. So what? It’s not as if there’s some magic day in the future in which the autistic person will suddenly become neurotypical and their dysphoria will disappear. Those feelings are still real, and their identity is still real: it really truly doesn’t matter why they have the identity they do. Even if those feelings do change 20 years in the future, we all have that possibility with every choice we make. Why is it suddenly invalid for a disabled person to make long lasting decisions about their body and identity because they might regret it later? Disabled persons are due the same ability to make serious and potentially risky decisions that all of us have.

Sure, there are some instances in which the origin of a feeling seems to be important, like if someone on the spectrum was stuck in some major black and white thinking and thought that liking “girly” things made them a girl, but I find myself utterly confused as to why it matters otherwise WHY someone feels as if they’re a different gender so much as what the impact is on the person of those feelings and whether it would improve their quality of life to recognize them as a different gender.

Perhaps even worse is the implication that autistic traits are in some way invalid, temporary, disordered, or wrong. Traits that are part of autism are still real and valid. they’re not symptoms, they’re not going to go away when we get better. They’re who we are, and while sometimes we can come to better arrangements with our brains (improving executive functioning, lowering anxiety), the basic thought patterns ain’t gonna change.

My mental health and neurodivergence affects my identity in tons of ways. That doesn’t invalidate my identity, nor should it mean I don’t get to make identity affirming, serious, important decisions. Good gravy.

Please Believe Your Patients

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I had an intake with a new therapist yesterday. I’ve had a lot of intakes over the years. So many. At this point I’m pretty relaxed going in to intakes, and I can autopilot explaining a lot of my issues. So I didn’t really prep a whole lot in advance, and went in without thinking overly much about what I wanted to work on (I had been referred by another therapist for some mindfulness work, but also wanted to deal with some trauma and get some support for general coping skills).

I disclosed all of my diagnoses, and when I described autism the therapist responded “That doesn’t sound much like autism to me.”

It caught me off guard. I tried to explain my symptoms, but I hadn’t thought in advance and felt tongue tied. I know my autism quite well, but somehow I couldn’t explain it in the moment when someone I was being vulnerable with suddenly questioned me and one of my core identities.

Hey therapists? If you’re going to question a patient’s diagnosis, please wait until after the first session at the very least. Build up a bit of trust. Establish a relationship. It’s so easy to put people on the defensive when you question them.

I get it. You want to find an accurate diagnosis for your patient. You want to approach their concerns with the most helpful label and lens. But boy howdy does it feel awful to walk in and be asked to defend your diagnosis. I am not a mental health practitioner who has the ability to diagnose anyone, much less myself. I can tell you how it feels for me, but it’s pretty stressful to be asked to lay out the DSM criteria and explain how I fit each of them, especially when we’re talking something as widely misdiagnosed and misunderstood as adult autism in women. It super sucks to give examples of your diagnosis and be told “no that doesn’t sound like autism to me” repeatedly. While many of us know our symptoms well, it can be hard to put them in order at a moment’s notice in a way that is easy to understand and convinces you of our diagnosis.

Of course there’s a time and a place for a therapist to push their patients to question their own identity. But that’s some pretty high level stuff and I wouldn’t want to do that with someone that I didn’t already have a solid working relationship with. If I could ask anything of my therapists it’s that they would trust me, at least a little bit, when I share my self understanding with them.

Why am I harping on about this?

The therapeutic alliance, or the feeling of solidarity between a therapist and patient is one of the highest predictors of good outcomes from therapy. Both from personal experience and from the research, I can tell you that when I trust a therapist and more importantly when I know they trust me, I am far more likely to internalize their suggestions, follow through on recommendations, and open up about challenging issues. And also from experience, one of the fastest ways for me to feel as if you don’t trust me is to invalidate my feelings and beliefs, question my statements, and put me on the defensive.

While in this case I’m specifically talking about early in the therapeutic relationship, it’s also important to remember throughout the relationship that if your client brings something new to you, don’t just dismiss it. I’ve had therapists question my asexual identity and my atheism when I brought them up, acting as if those couldn’t be the case for me. I have always walked away from those sessions feeling hurt and frustrated, and almost wishing I could quit therapy altogether. Even when you do have a solid relationship with a client, asking them to account for their basic identities is a really tricky line to walk.

Consider: Take the time to understand WHY someone identifies the way they do before responding. If you are going to question a diagnosis or identity, be specific about what seems off to you rather than just saying “it’s not that”. Work through the identity with your patient instead of dictating. Keep your first response validating, and let them share their reasoning at their own pace.

I know I’m just one person and don’t dictate the laws of good therapy, but having a validating environment is hugely important to mental health, and if a therapist’s office can’t be that I don’t know what can. So please therapists…believe your patients and validate them.

Isn’t This Asking Me to Be Psychic? Knowing When and What to Trigger Warn

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CN: Rape, eating disorders, self harm

In a surprising turn of events, I’ve had two remarkably similar conversations in the last day in which kind, empathetic, earnest people expressed some confusion about things like trigger warnings/requests that certain types of information aren’t public. In one case, someone brought up the question of personal responsibility for emotions: each of us can’t be expected to anticipate the needs of the people around us. Isn’t it asking for just that when we recommend content notices or discretion around certain topics? Isn’t it foisting emotional labor on others to ask that they know these boundaries? Aren’t people just kind of sensitive and we should all learn a bit better how to look past upsetting comments?

In another case, someone expressed confusion about how to be consistent in anticipating others’ needs while still preserving the ability to have difficult conversations and real dialogue.

If these hadn’t been my friends I would have started out with a lot of frustration with these people, because to me the principles at play here are quite obvious: if you can do less harm without much effort, then do it! It’s fairly easy to anticipate that certain things will hurt others (for example we all anticipate that yelling at others will tend to elicit negative emotions and we don’t have to be psychic to figure that out). You don’t have to know every trigger in the world, you just have to do a little bit of looking to find some common ones.

So it’s come to my attention that maybe social justice advocates have not done a good enough job of basic education about 1. what we think good rules of discourse are, 2. the underlying principles that someone can use to decide when or if to TW/CN or avoid a topic, and 3. common triggers or areas that are highly likely to cause harm.

With that in mind, I want to lay down some really basic principles for why people who come from a social justice background advocate changing language and discourse in certain ways, how that is still compatible with difficult discussions between people of opposing viewpoints, and how we can use those principles to balance our own needs and limits with the needs of others. No biggie.

What Are Some Good Underlying Rules of Discourse?

So I’m not the kind of person who really thinks that topics are Off Limits or who believes in limiting language for the sake of limiting language. I’ll talk about nearly anything, I swear a lot, whatever. I don’t really love the rules that most people have about conversation, like ask the other person about themselves a lot. I’m bad at socializing. So what is it that leads me to adjust my speech and dialogue to not include certain words or to avoid certain conversations?

My basic underlying rules are that we should be honest, we should be kind, it’s good to talk through hard things, and everyone gets to set their own boundaries: no one is ever obligated to have a conversation with you or host your conversations. All of the things I advocate for are to give everyone the appropriate amount of information to follow these suggestions, or to adjust phrasing to maximize kindness and allow everyone to actually participate.

So You Care About Other People But Also About Open Dialogues: How Do You Decide When to Self-Censor and When To Expect Others to Deal With Their Own Emotions?

Well that was a lot of a title, but here we go:

The underlying principle that I use is actually fairly utilitarian. If I choose not to say this thing/use this word/add a content notice, how much will it curtail the discourse or impact me vs. how much harm does this action have the potential to cause?

I find that more often than you would expect, it costs me very little to adjust my language and it actually opens the discourse quite a bit to different viewpoints. Let’s use an example that came up recently:

Asking someone when/if they’re going to have kids.

There are very few important and meaningful discussions that I can think of that are truly curtailed by the general principle “it’s rude and kind of invasive to ask someone about their future offspring plans if they haven’t indicated they’d like to talk about it/you don’t have the level of openness where you’d talk about their body openly.”

Sure, you might be curious but fulfilling your curiosity is not really a strong reason in my opinion. You might want to have a conversation about your thoughts and opinions about child rearing or how you think parents should have more time off after a baby or the way women are pressured to have babies, or whatever. None of those conversations rests on the ability to ask someone else about their personal choice.

Or perhaps we could be talking about rape. This is a sensitive subject, and it’s one of the places where many SJ advocates suggest that you shouldn’t make jokes/bring it up without a CN/etc. Isn’t that explicitly saying we shouldn’t talk about it?

Well not so fast. It’s asking people to be a little bit more responsible with how you talk about it. Is it really stopping you from having a conversation if you have to say to your conversational partner first “Hey, I’m going to bring up something sensitive, is that cool?” Probably not.

On the flip side, just another (ANOTHER) reminder that being triggered is a major harm. It’s not discomfort. It’s not feeling weird. It’s flashbacks and panic attacks and dissociation and self harm and actual dangerous behaviors that push you back in your recovery.

So my general principle is “how bad do I need to talk about this topic or use this specific word that I’m willing to truly do harm to another human?”. It’s rare that I come down on the side of “yeah I really need to cause this person a panic attack because it’s SO important that I talk about my opinions regarding calories with them.” In the instances where I do really think it’s important to have the conversation and it’s a relatively public forum, I include a content warning or trigger warning.

You can see my thoughts on the usefulness of trigger warnings here, my personal experience with their use here, and an explanation of how calories in particular can be triggering see here.

I would suggest that avoiding language that sets off intense, overwhelming, irrationally painful emotional reactions is the BEST way to facilitate deep discussion, because when you start a discussion by triggering someone you’ve just shut down all of their higher level functioning and sent them into survival mode. If you think that’s going to happen when you bring something up and you do actually truly want to have a conversation, you might want to consider letting people know what you’re about to bring up so that everyone can prepare and come to the conversation thoughtfully.

Wait So Doesn’t This Mean I Have to Stop Talking About Politics Completely and Won’t That Destroy Discourse?

Ok this might be a bit of a strawman but I have seen some folks feel a lot of worry about voicing any political opinions because the current atmosphere is so divisive. Let’s try using the same kind of calculus for that!

Not being able to talk about politics at all has a fairly major impact. It really does curtail discussion, and could certainly cause some amount of harm (for example if you are worried about a certain issue and want to be able to educate others about it, you would think it’s super important to discuss it openly). In addition, most people are not triggered by political discourse: they might feel upset or stressed out, but that’s something else entirely. So I’d balance that out pretty differently.

I might suggest avoiding racist or sexist language in your politics, or attacking people personally in your political conversation, or maybe even noting that you’re gonna talk politics for a while so those who are burnt out can take care of themselves, or taking a break from politics sometimes because it can cause people to lose their damn minds to talk about nothing else because those are all smaller steps we can take. All of these are little steps that give everyone more info and allow each person to opt into or out of discussions that work for them, in the same way that a trigger warning might.

Obviously there aren’t any hard and fast rules to this kind of calculus. Some people might decide that using the word stupid does too much harm because of its ableist implications and choose not to use it since they don’t see it as super difficult to remove from their vocabulary. I personally haven’t come to that same conclusion. But I think discourse would improve if we all spent some time thinking about whether the right to voice your opinion should trump someone else’s need to not feel overwhelming, intense emotional distress that often comes with clinical implications and behaviors.

That’s All Well and Good but I’m Not Psychic, How Do I Know What Will Harm Others? Isn’t That an Unreasonable Amount of Emotional Labor on Me?

This is, I think, at the root of a lot of the anxiety about content notices: how do I know? Won’t I be screwing up all the time because I can’t guess what will truly cause harm to others? I don’t think I should be required to anticipate the needs of others without them telling me.

Good point! That is hard, and it is definitely anxiety provoking to feel unsure of what will set others off.

I think that there is some level of anticipating the needs of others that is reasonable, for example we all can anticipate that yelling at others will elicit a highly negative reaction (very obvious example). What I think we’re beginning to understand is that there is a grouping of common topics that are also highly likely to cause an intense reaction.

In my understanding of trigger warnings, we have to be aware that we can’t trigger warning every possible trigger because literally anything could be a trigger. Expecting someone to label your very specific trigger is asking someone to anticipate your needs. However there are many common triggers that we can generally expect, and it’s reasonable to expect care around them (sexual assault, eating disorders, etc.). I have seen examples of folks who don’t understand that you can’t warn for everything, but that is not my general experience with trigger warnings/content notices.

You can Google lists, or find some lists of common triggers here, and here. There isn’t 100% agreement on what should be considered a common trigger, but you can get a good idea based on these lists.

Oh and cause I didn’t write enough, as kind of an addendum, I try to listen to minority communities when they say “this type of conversation can easily cause us harm” and include that in my calculus. Generally I go off of stuff like lists of common triggers, because there are some things that enough people have come out and said “this one is really rough on me!” that I’d rather just be sensitive about bringing it up.

I hope that gives a reasonably clear explanation of how I figure out when I should add a note or avoid a phrase. It’s not failsafe, I’ve had folks make requests or get angry at me when my calculus has come out differently from theirs. But that’s how I preserve discourse (and trust me, I get into a lot of discourse on sensitive topics with all kinds of people) while also doing my best to make space for people with trauma and mental illness and oppression.

Reproduction and Gender Identity

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I’ve got some exciting news to share with y’all: I got my tubes tied last week! I haven’t exactly made it a secret that the childfree life is the one for me, but if I’m honest, I don’t think I’ve really hit on the feelings that make me look at pregnancy and childbirth and feel panic/rising tears/shortness of breath. I have a lot of practical reasons to not want to be a mother: my mental illness and autism already make independent living a challenge for me, and adding someone dependent upon me sounds awful. My husband and I don’t make enough money to support a child. I’m an incredibly busy person and don’t know how I could devote the appropriate amount of time to a kid.

But more than that, it feels antithetical to my basic identity to be a mother. I don’t know how else to explain it. Having reproductive organs isn’t something that I see in my gender identity, and motherhood isn’t something that makes sense to me in my self conception. There’s an emotional response when someone suggests that I could be a mother that is not what I’ve heard described by other childfree folks.

Imagine that you’re a cis woman who has never considered themself to be anything else and someone walks up to you and asks “when are you planning to grow a dick” in a tone that implies this is the most normal question in the world. That’s how I feel when people ask if I have children or when I plan to have children. I feel a level of disgust, fear, and confusion when I think about the literal possibility of having a child: not only does it seem like something I don’t want, it feels actively wrong and inappropriate in some way.

In my attempts to understand my gender identity of late, I’ve been noticing that the language of gender is the only language that I have that really seems to capture the emotional elements of my relationship with my reproductive system.

The biggest example that I can think of is gender dysphoria. I realize that dysphoria is something that can exist in other contexts: I’ve certainly experienced dysphoria in relation to my body (hello eating disorder). But the most basic description of dysphoria is simply unease or dissatisfaction, whereas most descriptions that I have heard of gender dysphoria focus on the idea that there is a mismatch between your physical self and your perceived self, and that element is an important part of how I relate to my reproductive system.

I think it’s also hard to talk about our relationships with reproduction without gender and sexuality getting muddied up in there. So for some reason, my decision not to have children feels wrapped up in how I see myself as a “woman”, or as not really a woman except that I don’t care enough to label myself anything else. But reproduction, sexuality, periods, all of the bits that come with having a uterus and ovaries and estrogen are things that make me feel awful.

It’s not that I dislike my breasts or my hips or the fact that my body gets coded as female. It’s that I dislike my reproductive system, and I don’t know what that means for my gender identity. Is neuter an option? What about a Barbie doll?

It’s possible that my choice to have or not have kids is completely unrelated to my gender. It’s possible that my choice to remove parts of my reproductive system is completely unrelated to my gender. It’s possible that my extreme discomfort with subsuming my identity to the role of “mother” is unrelated to my gender.

It’s possible but it sure as hell doesn’t seem likely.

I think part of what I’ve begun to balk against in the identity of “woman” is the expectation of women to fulfill roles (mother, wife). I will never have children because I will never make another person more important in my life than I am, and that is required of a parent. I feel like the more I explore what it actually means to be a “woman”, the further I’m moving away from being able to accept woman as my default just because I don’t car. Getting surgery to change my body feels a little bit like the first step towards being proactive in creating my own identity, whether it’s a gender identity or a sexual identity or something else entirely. It feels lovely, and I can’t help but wish we all had more opportunities to actively choose things about our bodies in this way.