“If you want an Oscar, they give those for supporting roles.”

TRIGGER WARNING: ableism, racism, white entitlement, transphobia

OK, so YOU ALL.

I have had a radical shift in thinking. A radical shift that is also a continuation of the path I’ve been wandering, a fitting in of a puzzle piece that was waiting to be placed there. (I recently had the honor of hearing the founders of the #blacklivesmatter movement, Patrisse Cullors, Alicia Garza, and Opal Tometi, speak. They were SO amazing!)

Cullors, Garza, and Tometi. Source: http://www.blackalliance.org/the-new-leaders-of-social-justice/

Yes, I live at a particular intersection of trans and disabled.

But SO DOES, LIKE ALMOST EVERY TRANS PERSON. Trans people and disabled people are not separate. We are nearly THE SAME THING. Trans people are inherently traumatized by the world around us. It almost always gives us chronic illnesses. Even if we have no other disabilities, we very, very often have these ones.

Trans justice and disability justice are the same thing.

We’ll use some examples from my own life, or fears from my own life, just to illustrate a small amount of the overlap.

Trans disabled lives are lived whenever we can’t “work hard enough” to prove that we’re a “good trans person,” to make a good first impression on all those cis people.

Trans disabled lives are lived every time we are misnamed and mispronounced in the doctor’s office.

Trans disabled lives are lived every time there isn’t a space in the psych ward for our genders.

Trans disabled lives are lived when there isn’t therapy that lets us be who we are, when therapy itself traumatizes us.

Trans disabled lives are lived when we have GI problems and there are no safe bathrooms for us.

Trans disabled lives are lived when the only trans spaces are full of chemicals and fragrances that make them inaccessible for us, and the only disability justice spaces don’t ask for pronouns.

Trans disabled lives are lived when the only trans-friendly psychiatrist in your area won’t see you because they can’t personally separate the workplace discrimination you’re experiencing for being trans… and disabled.

Trans disabled lives are lived when we traumatize and retraumatize each other in the only trans relationships we have.

Our oppression creates our trauma creates our disabilities, living deep in our cells, in our bones, in our guts. Oppression disables us, in so many senses of the word.

We cannot have justice in any movement without disability justice, we cannot have it without healing justice. Each and every one of our oppressed communities has been disabled by our oppression. Often it’s some of the most vulnerable members who have borne this cost.

Oppression is not the only thing that disables us (and some of us are born with disabilities). And not everyone who is oppressed is disabled. But we cannot overlook the huge overlap, even if many aren’t ready to take on the identity “disabled.”

I’ve realized that I’ve been living narrowly in my ideas about what that means. I know all oppressions are interconnected, but I’ve been separating out my solidarity work from the anti-oppression work that directly affects me. On one hand, this is necessary—we can’t appropriate oppression, we have to work from solidarity.

On the other hand, this has created a myopic view of what oppression looks like and what interconnections there are.

The founders of the #blacklivesmatter movement are not just black women who are mostly queer, they are also mostly chronically ill and traumatized.

And they started a nationwide, global movement.

With all that inside their bodies.

I knew intellectually that queer disabled black people existed, and that they struggled. I’ve read some of their writing. But somehow, seeing these women who started such a successful, viral movement right in front of me, hearing their words, their inspiration—well. Our struggles might sometimes look different, but they are different heads of the same beast.

But here’s the thing: I’m not dealing with as many heads of that beast. They are just facing more shit.

I really do need to sit down and shut up, a lot of the time.

OK, I knew that, too, intellectually. But I really need to internalize this.

Because the movement cannot be led by people like me. It will not be led by people like me. I am still a person of privilege, even though I am queer and trans and pan and gray ace and disabled. Even though I am a survivor. So many of us are all of those things–and more.

They are the ones that need to be at the front. My voice can be part of a chorus. It can say my experiences, but it must always be informed by others.

And, as I think it was Patrice Cullors who pointed out (a point that she credited to Lourdes Ashley Hunter), “If you want an Oscar, they give those for supporting roles.” (loosely quoted)

Our place is in supporting roles. That is our non-oppressive place to be. Anything else is reproducing white supremacy, classism, the whole nine yards.

We don’t need that in our movement.

What we do need is more care for each other, more love, more support. What we need is holding each other despite it all.

So I’ll keep on moving and shaking and writing and listening and doing my best to keep my place.

Thank you so much, Patrice, Alicia, and Opal, for your work, your words, and your inspiration.

I am ready to begin again.

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THIS JUST IN: Therapists Nationwide Control Clients’ Genitalia in Practices Sanctioned and Required by DSM

TRIGGER WARNING: bad therapy, gatekeeping model of trans care, gatekeeping apologism, staying closeted, cis entitlement

To the “trans ally” who said that it is good for everyone to talk to a therapist, just a few times, just to make sure… To all the “trans allies” and others who seem to think that gatekeeping is a good idea.

Even more, to the trans people who have to put up with this BS in therapy, and who start to believe it, too.

To my younger self, who believed that a therapist knew more about who I was than I did—keeping me away from myself for six more years because of a “gender specialist.”

To all the people who stay away from their true selves longer because a therapist “knew best.”

Gatekeepers are not here by our own consent or for our own good. The only person who needs to make sure that we fully understand medical decisions we make about our bodies is our doctor. And they simply are there to tell us what effects this might have on our body.

We then make the decision about what’s best for us.

In no way is it benign or helpful for us to be FORCED to go to therapy about it. Not only are we forced to go to therapy, but the decision is taken entirely out of our own hands. In a space where therapists aren’t even supposed to give us a hug, they are supposed to decide what we are able to do with our bodies. That is horrible therapeutic practice.

In a space where physical touch is forbidden, therapists still reach into our genitalia and into our chests and force them to stay a certain way. In no universe is that therapeutic. In all universes is that traumatizing.

And cis people, in general, you have no fucking clue what you’re talking about when it comes to being trans. I don’t care how many trans friends or lovers you have. You still have no fucking clue BECAUSE YOU AREN’T TRANS.

And because you have no fucking clue, you have NO RIGHT TO AN OPINION on this subject, or any subject when it comes to trans people. Fine, think your thoughts in your mind. But your opinion can never trump the opinions of THE PEOPLE WHO HAVE TO LIVE WITH IT.

You have no right to tell me what you think about a therapist being able to tell me what secondary sex characteristics I should have.

The only person who gets to decide what to do with my body is me. Every. Single. Time.

You are a rotten feminist if you think otherwise.

The gatekeeper model of trans “care” has traumatized trans people since its inception. We have been given access to medical transition based on curiosity, based on research, based on paternalism, based on saneism, based on how well we wear a dress, how well we wear our cuff links, how well we walk with a swagger or a swish.

Only in the past few years have non-binary people even made the list on standards of care. It’s certainly not only in the past few years that we’ve existed.

Only in the past year has our trans-ness been designated “dysphoria” and not a disorder. Only this year have we been told that we aren’t crazy simply because we are trans.

How do you think that a system that produces so much suffering for trans people is BENEVOLENT? How could that be? The only way you would think that is if you didn’t experience this sort of trauma at the hands of providers. Clearly, you haven’t.

Providers in general, as a system and as most individuals, enact these power trips every single time. It’s enough to send you to….

Oh. Therapy. Womp wooomp.

Doctors do not have our best interests at heart. Therapists do not have our best interests at heart. They are on power trips, large or small—at least on the trip of authority. They are not here to help us. They simply stand in the way of us and the care we need.

Yes, there are individual exceptions. But if you are attempting to get something you need from a provider for any period of time (for more reasons than medical transition—but that’s a story for another time), you will quickly come to this conclusion.

So why is it again that my THERAPIST gets to decide whether I cut off my boobs or not??? Why do YOU, cis person, think it is acceptable that a therapist can decide this for a trans person?

Could it be that society dictates that cis people always have a right to trans bodies—to gawk at, to experiment on, to decide what gender we are, to decide what’s appropriate for our “freakish” selves? Could it be, perhaps, that SOME CIS ENTITLEMENT has gotten in your way?

Consider that it is a possibility… and then get your hands off of my crotch. I like to keep it to myself, thank you very much.

Letter to Former Therapist #1

TRIGGER WARNING: Cissexism/transphobia in therapy, saneism, suicidal ideation

This letter is pretty self-explanatory, but I want to give a brief introduction. I had been seeing this therapist on and off for six years, and it was only after we stopped seeing each other, mostly for reasons unrelated to the content of this letter, that I realized the full extent of what had happened in that office in terms of my gender. This is something that is still very painful for me to process, but I am sharing this (slightly edited) letter with you all because I hope that sharing my story will help other people in similar situations, or other people who are considering therapy. If any providers are reading this post, take this post to heart and consider if any of it applies to you. If it does, make changes to your practice now.

Written: 5/1/14

Sent: 5/17/14

Dear [Former Therapist #1],

I have realized in the past few weeks that there is something more I need to say to you. Feeling both anger and loss, caring about and valuing much of our therapeutic time together while realizing how you hurt and utterly failed me in this way–it isn’t an easy combination of feelings. When someone has both given so much and also deprived me of something so important, the emotions are not easy to navigate. I know that you have always had good intentions for me, but good intentions and positive effects are, as you must know, not the same, often. I am going to give you some feedback here that I hope you will take to heart, so that you can have a positive impact and a practice where all clients are treated equally. Although I am angry about this, and I wanted to show you that impact in this letter, I also wish you the best in implementing these changes. Please get in touch with me if you need further input, or if you otherwise want to respond.

I talked with you in one of our sessions a few months ago about my doubts and worries about us working together again. I told you that you had shot me down years ago when I had first brought up questioning my gender to you. What I didn’t do then is remind you what you had said to me.

I don’t remember every detail of those conversations we had when I was 18, but I do remember the traumatizing parts. I remember that, back in what must have been our first or second session, you asked if I wanted a penis. Uncomfortable, and confused as to whether this was the only measure of trans* ness, I said that I didn’t think so. Shortly afterwards, I think you must have concluded that I wasn’t trans*, or I must have concluded that I didn’t want to repeat that uncomfortable conversation, because we stopped talking about it for a while.

Later, maybe months or a year later, I worked up my courage and brought it up to you again. You said that you thought I had penis envy or wanted a grab at male privilege. (At the time, I was too clueless about feminism to know what you meant, so I mentally shrugged.) You said that I wasn’t trans*. “But you’re so feminine!” you said. (This was especially hurtful, given my current gender identity. I don’t identify with the word “feminine,” but me having some characteristics that get categorized that way doesn’t mean that I am a woman.)

I didn’t talk with you about it again until five years later, this current year, when my internalized transphobia and gender dysphoria (among other things) was making me suicidal. (Partly, I had buried it for some time, but I found a journal entry that showed that even in the midst of that fog, I was aware of my dysphoria. Besides, a lot of why I’d buried it was because I hadn’t been met with affirmation from you at all.) When I brought up my gender identity as one of my concerns about working with you again, you showed that you had evolved in some ways. You told me that you had been naive then, and that you were sorry. (But I don’t think you remember what you said! At least, I hope you didn’t, with that response.) You said that one of a therapist’s most important jobs is to eliminate their prejudices, and now you have no personal investment in your clients’ genders. You said that you understand that for people who don’t fit into the binary, trying to fit them into the opposite-gender box can be just as damaging. (Here, given that I hadn’t talked about my gender with you in five years, I felt you were subtly gendering me again.) Then you said, “Given all the evidence, I think it’s time for a reevaluation.”

This final sentence shows how much further you need to go. You do not get to evaluate my gender. You do not get to tell me who I am. Not any more than you get to tell your cis clients who they are and what genders they should be. Not only had you led me away from my true self for an extra six years, invalidated my gender identity, and used pathetic tropes to degrade who I am (trans men don’t just transition for a grab at male privilege! And the words “penis envy” should never be uttered with any kind of seriousness in a gender therapist’s office)–not to mention that you seemed to think inquiring about my thoughts on my genitalia was a good way to both break the ice and determine my gender–you now were judging yourself professionally fit to make those calls again! Instead of realizing the significant damage you had wrought on me (and probably many other trans* clients), instead of working tirelessly to correct that damage, you simply said that I might be able to convince you, the ultimate authority on my gender, that I am trans*–this time around.

As a first-year in college, I specifically sought out gender specialists so I could start exploring my gender identity. I naively thought that it was a safe space to do so, and foolishly bought into the idea that I could trust my therapist over myself. While I know that your statements don’t hold complete power over me, and, of course, they don’t determine my gender, your authority played a large role in squelching my shy early feelings of my true self, feelings I’d been conscious of as trans* since high school, but had been waiting for a place to show. It is true, also, that especially in the early stages of gender formation, we tend to listen to others over ourselves. You have a huge responsibility!

Had I received nurturing and competent care when I was 18, I might be in a very different place today. Many of my mental health issues would at least be different, if not lessened or resolved. I might have been exposed to less or different trauma. I might even be a few inches taller, if I’d decided that testosterone was the way to go! I’d already be myself. Maybe I wouldn’t have gone to the point of considering suicide to get here.

I think that you still don’t understand the gravity of what you did five years ago. You still don’t understand the danger of labeling yourself an expert on others’ genders, or the absolute destructiveness of the gatekeeper model of trans* care. In many ways, you taught me how to advocate for myself in therapy, and how to break down the barriers of authority between therapist and client. Yet you still cling to authority in this way. I shouldn’t have to convince you of who I am. I am certain that you don’t ask your cisgender clients to do so. I should be able to simply be, in therapy of all places. I should be supported in all ways to become more myself!

Your discouragement took away six years of my life as myself. It likely took away many others’. Please look deeply into yourself and your practice to see what amends you might be able to make with other people you have harmed through your prejudice. You have a responsibility to your current and former clients to do so. If you fail to do this, you continue to fail the trans* community. Reach out to former clients and apologize, and ask if there is anything you could possibly do to connect them to resources or help now. Check in with current clients to be sure they feel affirmed. Never “evaluate” anyone’s gender again. Ask for accountability and feedback from the trans* community and other gender specialists (maybe them, but having met many of them, a lot of them seem as or more messed up). Please look deeply into yourself and your practice, in these ways and/or others (it is ultimately your responsibility to figure this part out) to make changes now for affirming, egalitarian care. You know the stats–lives are on the line

One more thing. I am telling you all these things, taking this time and energy, because I have seen you walk the walk of eliminating prejudice before. I hope that my trust that I have placed in you is not ill-spent. I have faith that you will take this feedback seriously and do your best to right these wrongs.

Your former client,

Still fucking known as,

[Birth name]*

*Since this letter was written, I have started trying [current name] and using they/them pronouns.

The Thing About “Crazy” (Part 2 of 2)

TRIGGER WARNING: saneism, ableism

Note: This is a summary of various ideas from a conversation I had a few months ago with the person I was dating at the time. Sometimes there are direct quotes, sometimes there’s paraphrasing. Thanks so much to them for agreeing to make this available for other people to browse, and for their contribution! 

Say yes to “craziness” in our lives! Break yourself free from the control saneism likes to exert on all of our behaviors! Why? How? What does this mean? Take a look below…

• It makes us more comfortable with each other.
• Alone or with others, do something in public that your inner social norms tell you that you aren’t supposed to do. Jump, dance, skip, hum, wiggle! Cry! Shout! Rock! Don’t conform to expected behavior when you want or need to do something else! Keep in mind, though, that this should be something that comes from you–this isn’t a chance to “make fun” of how “those people” look or act.
• Remember that, although saneism directly oppresses people with mental illnesses, everyone is shoved into a box of behavior because of trying not to look “crazy.” If it wasn’t seen as “crazy,” how many behaviors would people engage in that they don’t engage in now?
• I’m not talking about skydiving or revolution or starting a new business or whatever else people put the word “crazy” inaccurately onto (although that linguistic/psychological divide is there too, and you should do those things that you want but don’t allow yourself for, too). I’m just talking about those things, literal behaviors that mark people as crazy, that are “against social convention.”
• Remember also that “crazy” is more often applied to people who experience other kinds of oppression as well, as a way to discount them. People can be considered “crazy” due to their defiance of norms/oppressed status, people who may not have mental illness. Just think about stereotypes of “crazy women,” or racialized stereotypes that also include “crazy” somewhere in that list of bigoted adjectives. Remember that refusing to police your own behavior based on this list of norms can be lessening this divide too. (That’s not to discount the fact that people often non-consensually read or label others’ personhood or behavior as “crazy,” and that there are many different ways that people try to survive in a world that has this reality. Stay safe, everyone. As safe as possible in the moment, anyway.)
• You may feel frozen even thinking about stepping outside of the “sane” behavior box, a box you likely have tried very hard to conform to. That’s OK. Start small.
• When we say yes to “crazy” behavior, in the literal I-don’t-mind-looking-like-I-have-a-mental-illness-right-now way, and in the figurative, bigoted way it’s used as well, we are saying yes to ourselves and others, just as they are. We are saying yes to the needs we may have to sob or shake or lie in bed all day or rock or hum. We are saying yes to our dreams, to the impossible, the fantastical, all these things that we deny ourselves and relegate to the supposedly illegitimate, impossible, unintelligible, ridiculous, even magical/exhilarating world of “crazy.” These are our realities, our literal realities as mentally ill people. These are also the realities of the world around us, who has closed its doors to literal insanity and anything else it doesn’t want to welcome with that word, thrown casually, “crazy.” “I cannot love crazy things,” we say. “I am unlovable if I am crazy, unhearable, illegitimate, not worth listening to or having around.” We say these things when we say the word “crazy.” Not only are we being saneist in terms of shutting people with mental illness out, we are shutting ourselves out too.
• When we hold ourselves to these confines, it hurts us and the people around us, people we care about. We feel closest to the people we can be really genuine with—and that includes being open about our mental illnesses and being free to express parts of ourselves that are otherwise labeled as “crazy.” Make room for others, too, to be like that around you, to be their genuine selves.
• It hurts others when they feel like they have to apologize for their craziness, when they feel lucky to have people that tolerate craziness. Don’t simply tolerate it! Celebrate it! It is about treating people decently, about treating everyone as whole people with entire selves that contain so much. It’s not a favor to do this. At its best, it’s a deeper, more loving holding of everyone around us. At minimum, it’s treating everyone like a person—which hopefully is loving! Haha, you aren’t getting out of love on this one!
• Keep in mind that at all times, this is a practice of being true to yourself—not of appropriating, imitating, or making fun of others’ behaviors. Set yourself free from the grip of saneism on your life—but don’t make ugly imitations of what that might look like for people with mental illnesses that are not your own.
• All of this has varied intersections and relevancies to physical disabilities and autism, but as that is not a part of my experience, I don’t want to delve into it more. I just want to recognize the closeness of policing of behavior and bodies and how it relates to other forms of ableism.

Also, check out this picture (source below):

https://www.facebook.com/MysteraMagazine/photos/a.260956163935285.67825.163953310302238/738865629477667/?type=1

Dreaming While Sick, Crazy, and Trans

TRIGGER WARNING: discussion of suicidal ideation & statistics, also discussion of general oppression of sick, crazy, and trans people

 

We all have hopes, goals, dreams. We all want that shit to happen real bad. I think part of why it’s so hard to look forward in life as a sick, crazy, trans person, even for me, who has a fuckton of advantages, is that it seems like this shit is going to stop us in our tracks. We aren’t supposed to be “useful” or have goals or be able to interact with “society,” whatever that is. We aren’t supposed to be able to make an impact on those around us, at least not a positive one. We aren’t supposed to have futures.

And, too often, many of us don’t have futures. Many of us don’t see a future for ourselves. We fear that others will cut short our lives and our dreams or just our daily getting by. Many of us worry that no one will see us as worthwhile, for any of the above reasons. And it’s killing us. I know that, if you add up the attempted suicide rates for all the different diagnoses I have, plus my trans identity, it’s pretty fucking high. PTSD: 27%. Depression: 20%. Secondary care for IBS: 16%. Non-binary trans: 43%.

That’s a pretty fucking scary list. I have never taken statistics, and those are some scary statistics. I think sometimes about how suicidal ideation probably wouldn’t even be as present for me, though, if there wasn’t the shame compounding this stuff. Yes, I still might be a little crazy. Yes, I’d still be in pain sometimes from IBS. Yes, I’d still be trans and I’d experience physical dysphoria (not that all trans people do–but in this utopia, social dysphoria would be mitigated almost instantly). But in some utopian world where people accept you where you are, where people envision futures for all people coming from everywhere, where people don’t assume genders and affirm everyone, in this utopian world, I would feel like my dreams are more possible. I would feel like my life is more possible.

We don’t live in that world, though, and I know that you, like me, probably need some encouragement to get where you need to go. You need the encouragement to keep on getting out of bed (if you can) every day, maybe, to eat some food, maybe, to talk to people around you, even, or not, if you need to. You need encouragement to live your daily life, sometimes. I know I do, when I’m sick, crazy, and trans. Which is all the time. Sometimes just the sheer logistics of negotiating your life are too much. I want to say that that struggle is enough. It is good. It is important and noble. Thank you for doing it. Thank you for continuing to exist and live and love and care, and, yes–

dream. Thank you for holding onto those dreams even when everything seems to be falling about your ears.

They are possible. They are beautiful. They can happen. Existing is enough, and, yes, there is a future, and it is not only about a daily struggle, the daily struggle to actually do the dishes or floss your teeth or to get through the pain or for people to use your right pronouns or to be seen as a fucking whole human being. This is all life is, and it is not all life is. You can and do have a future as a trans person, as a sick person, as a crazy person, as someone with a disability. Remember that you deserve this shit just as much as anybody else. You have a right to be here. You have a right to be valued, to be heard. You have a right to be your own fabulous gendered self. You have a right to your mind and your feelings and for holding them, or not, however you need. You have a right to be sick in bed all day. And you have a right to take the space and place in the world that you have longed for.

Many people will say that you do not have a right to these things. But I see you, here, still living each day. I see you holding onto your dreams. I can’t say all your dreams are going to come true, or that shit is easy, because it’s not. But why not have dreams? They are wings on our heart. We all can use some wings sometimes.

Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.
Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.

–Langston Hughes

Also, some resources:

If you’re feeling suicidal, please ask yourself these questions. Is there anyone you can call to be with you right now, even if they aren’t someone who’s 100% affirming? What things can calm you down or make you feel better? Consider making a madness map: http://www.theicarusproject.net/article/mad-maps-building-trails-to-where-we-want-to-be-input-needed. What kinds of things do you want to do to yourself? Are you thinking of hurting yourself or someone else? If so, PLEASE call any or all of these numbers (I unfortunately don’t have numbers that are outside the US:

The Fenway GLBT Helpline: 1-888-340-4520

GLBT National Hotline: 1-888-843-4564

Q Hotline: 866-539-2727

If you’re 24 or under, Trevor Helpline: 866-488-7386

Check out this website (TRIGGER WARNING for discussion of suicidal ideation).

Also, check out this awesome link and recording of it, if you’re needing a little hope.

Hold on there!

My Brain is Broken

TRIGGER WARNING: discussion of people being tools about access needs

 

Or rather, it’s doing a lot of hard work right now to heal. And that’s pretty amazing, but it means a lot of sleeping and not a lot of time for thinking.

My concussion has me beat. I want to post more. I’ve had a lot of thoughts come through my brain, when it can think. But it’s not going to happen at the moment… my energy is focused on coming out to my immediate and extended family and my job, and just getting life done at the moment.

My PSA for the day, though, is about accessibility and access intimacy.

• Lights and noise are hard for me. They give me headaches. I sometimes have to leave the room. If you know this, TURN OFF THE LIGHTS. Thank you. And don’t stare or laugh about my sunglasses. Seriously.
• Also, for those of us with PTSD, some things are triggering. I know that for me and many (but not all, for sure) others with a trauma history, movie/media choices can be really hard. Your fun and silly action movie will give me nightmares. Your creepy TV show will make me shrink inside of myself. Be open about what content is in these things. Don’t assume I’m a bore or a drag because G rated movies are sometimes the safest bet… and even then not so much. (Not to mention that media representation/lack of representation can itself be super unenjoyable. But that’s, often, another topic.)
• In general, if you know that somebody has any condition that could make an environment that’s designed for able-bodied and sane people difficult to navigate, leave space for their needs. Ask for what accommodations they might need. Be clear that it’s totally OK. Make it safe for them to need those things. Don’t roll your eyes, sigh, or imply that you or others are doing them a favor.

Accessibility is not a majority vote. Some access needs conflict, but thinking about these things and creating space to hold and voice them IS caring for our community. It’s also basic politeness and respect. OK. Over and out. I’m gonna go lie down for some more hours.

We are not useless. We are fabulous!

TRIGGER WARNING: discussion of ableism, classism, trauma in movement spaces

Just today I was talking with the person I am dating, who said, “I just wish I could do more of those things, be able to go to protests and organize and work on the things I care about.”

I know I have often felt this. I know many others feel this, this uselessness. If we do not have the energy to spend on what is often seen as activism, then we are not committed to the cause. Then we are not, actually, useful.

Supposedly.

I say, though, that the idea of people with disabilities as useless is an idea that stems straight from capitalism. Not all aspects of oppression stem simply from capitalism, but capitalism is all wrapped up in many forms of oppression. It finds different ways to control each group, to make each group expendable. In particular, we are expendable because we are useless.

But we are human beings, not dollar signs. We are human beings, not the products we put out. We have lungs and stomachs and hearts and brains, and they are churning and working and thinking, breathing and beating, making us live each day. They may not work the way we find most comfortable or efficient all the time, but they work all the same. Efficiency be damned! We are miracles!

We are most certainly not flat pieces of paper with writing on them that get passed from hand to hand in a frenzy of abstract value.

The very meaning of justice work needs to be changed. The idea of what constitutes activism or organizing needs to be changed. How many organizers have I known who organize at the cost of everything else in their lives—their own care, the care of their families, and, in a perverse way, even the care of their communities. While at a meeting, they didn’t give their friend a ride to the doctor. While at a conference, they missed helping their kid with homework. I know that for some organizers, this is their livelihood and they have to go to these events. For many people who do not have organizing jobs, they need to choose between work and caring for others as well. What I am saying is that ideas of what organizing is need to be expanded, both for paid and unpaid organizers. The movement not only needs an accessibility check–it needs a priority check. We bring more people in when they are cared for, when they are in community. Caring and creating community IS organizing work.

The agitating that organizers do is important and it can have results that make a difference in daily life. But I say that truly good results cannot happen without everyone there, and these results start with people living in a community where they care for themselves, their families, and the people around them. They care deeply. They show up. They cook food for each other. So much of this work is about improving conditions at an institutional level, and that is direly needed work. But it is not the only kind of improvement that is needed.

These movements do not include me when I cannot show up, and I may have “skipped out on the movement.” These movements do not include us when they are not accessible. What happens when we don’t make space for everyone? What happens when we are asked to show up at the courthouse to try to free someone from prison, and we do not support people with experience being incarcerated in the wholeness of their trauma? They should be heading this work, and we need to make space for that support. We also may need to wait to take to the streets while processing trauma, but that doesn’t mean that we can’t organize! What happens when the spaces we book aren’t accessible for people with mobility devices, or children, or a bus pass, or interpretation needs, or mental illness? Many people who are dealing with intense forms of oppression are just trying to survive, just putting food on their table with multiple jobs—or have no money because they can’t work. If the people most directly affected by an issue can’t show up, we know what kind of bad shit can go down. These are not the movements I want to be part of. We cannot leave anyone behind.

Let’s organize for communities of care. Organizing can look like making food for a friend when you can. I say organizing is hanging out and talking about these issues, or shooting the breeze about nothing in particular. I say organizing is slipping in these topics whenever you can. Organizing is watching mindless TV with a friend. Organizing is watching someone else’s kids—or your own. Sometimes, organizing is simply existing. Sometimes, simply existing is really hard; it’s a huge success in itself. Sometimes, organizing looks like lying in bed all day, and sometimes it looks like getting out of bed.

Some may say we are useless, but they need to expand their vocabulary. We are fucking fabulous, and we are existing every day, caring for each other every day. We cannot let anyone out of our net. Let’s hold each other in all our fabulousness and need, however we can, whenever we can. This is building communities of care. This is making the change we need. This is caring for anyone who’s left behind by a capitalistic model of organizing, or just plain oppression. Let’s hold each other fiercely.

The thing about “crazy” (Part 1 of 2)

TRIGGER WARNING: ableism, saneism

 

OK, so when people say the word “crazy,” they can mean a lot of things. They can mean impossible, weird, silly, inappropriate, extreme, inconceivable, bizarre, ridiculous, stupid, inadvisable, and wild, among other things. Sometimes, even, they mean “mentally ill.” But not usually. Can you imagine how that would sound?

“Hey, did you go dancing last night?”

“Yeah, totally, it was so mentally ill!”

It’s usually not the meaning people are going for.

But when people use that word, “crazy,” and don’t mean mentally ill, many different things happen. They are, of course, implying that mental illness, and/or mentally ill people, might be impossible, weird, silly, inappropriate, extreme, inconceivable, bizarre, ridiculous, stupid, inadvisable, and wild, among other things (or that they do things that have those adjectives). That in itself is otherizing, insulting, and just plain saneist.

It is comparable to using words like “lame,” “gay,” and “retarded” out of context. Of course, there are differences. But many people throw these words around, and when it is brought to their attention, they say, “Oh, but I didn’t mean it like that.” When I called my THERAPIST out on using the word “crazy” in an inappropriate context, she said something along the lines of, “I like to use that word in all its contexts, but I’ll keep it in mind that you don’t like to use it.” Any provider using this word really needs to check themselves. Everyone should check themselves, but, come on, mental health providers, you are a breed of ill repute, but even you should know better than to throw this word (and its cousins, “insane,” “mad,” and “nutty”) out there out of contexts. Your clients might IDENTIFY as crazy! I do, sometimes.

When we use the word crazy in this way, we can easily alienate people who have mental illnesses, whether or not they use that word to describe themselves. Don’t do that, folks. We already have enough alienation as it is.

There is another piece that happens, though. Not only are we ostracizing people with mental illnesses, we are also ostracizing whatever it is we call crazy. We are dividing it out, marking it as something that is not only all the other aforementioned adjectives, but also as something that is not worth listening to, is not worth our consideration, just as we mark people with mental illnesses as not worth our consideration. Craziness exists as an outcast of society. We draw a line, and on one side exists “crazy,” and on the other exists the “sane,” “civilized” world. Whenever we call anybody or anyone crazy, they are pushed over that line.

When we call things or people crazy in this insincere, inaccurate sense, then we are putting them over that line. We are putting them out of reasonable reach. We are saying that there are certain items, behaviors, or people that are not worth taking seriously.

The threat of being called crazy holds us captive in “sane” behavior all of the time. Whether it’s not admitting our true emotions, pretending to hold it together when really it’s taking a toll on us, or whether it’s simply that we want to physically move around more or in different ways than our years of schooling and societal expectation have allowed. Have you ever noticed that young children who are typically sane and neurotypical still have more leeway than sane and neurotypical adults in terms of their behavior? They can say wackier things and move their bodies around in ways that would be considered crazy for adults. There is still a line for children, but the line is different. It encompasses more. The fact that this line shifts for different age groups shows how constructed the idea of “sane” behavior is.

When we say the word “crazy,” we are limiting not only others. We are limiting ourselves. We are saying what behavior seems too fantastical or bizarre to exist in our polite society. We are not only refusing to love everyone in this world—we are, in many ways, holding back love for ourselves.

Of course, it’s much harder to hide a psychiatric or emotional disability than it is to hide the daily things that sane people are tasked with controlling for the sake of appearing more sane. “Passing” as sane is both a privilege and something that takes a deep toll. But, while it’s clearly harder for people who do experience mental illness, using the word “crazy” deeply affects us all.

Unless someone describes themselves as “crazy” as part of their identity as a person with mental illness, don’t use that language. Practice loving yourself and the world in a huge, hugging embrace. Give space for everyone just to be. Saneism takes its toll on everyone, albeit in different ways and extremes, and refraining from using “crazy” is a big place to start.

Three notes that may apply to listeners, friends, providers, or others

TRIGGER WARNING: ableism, saneism, provider dehumanization/disengagement

 

To therapists: I am not a “case.” I am a human being. If I am a “case,” so are you, therapist sir or ma’am or whatever you may want to be called. You are a case of dehumanization. I am a case of humanity. We are not a “population.” We are a community. We are not just our diagnoses, and our diagnoses are more than us; we have our own whole full lives.

To medical providers: I have been living with chronic pain for five years, and a lot of that was malpractice. Even if my prognosis is good, and even though you have not been here for most of that time, sometimes, I don’t want to be cheery. Sometimes, I don’t want to be the easy “patient.” Often, I am not brave at all. Oh no—that word—“patient.” I am a human being, not a “patient,” not another file folder for your office, to be tucked away and locked after each half-hour visit, months apart… I wish much more, if not all, medical care was much more like acupuncture, where, once you adequately explained your perspective on the issue, you lay there and napped while other people fussed over you and actually put their heads together to try to put you together again. Take my problems seriously—and also take me seriously, as a person apart from an equation to solve. I know my own self best, and I want your best brain to help me.

To well-meaning friends and acquaintances who feel the need to diagnose and cure me right away: I may or may not have tried daily kale smoothies, aromatherapy (fragrance sensitive anyway), eating no gluten, exposure therapy, eating no dairy, traditional medicine, somatic experiencing, muscle testing, acupuncture, hiding in my room all day, exercising more, denial, yoga, constant discussion of my problems, tai chi, your grandma’s herbal tea, detoxing, EMDR, eating only broth, eating only cooked fruit, EFT, probiotics, just getting over it, considering the mind-body connection, blaming all my physical problems on my PTSD, blaming my PTSD on my physical problems, and/or meditation. I don’t even have to tell you what I’ve tried, and what was helpful, and what was total hogwash. You know what? Unless you suddenly became the expert on my mind and body, it’s none of your business!