Trigger Warnings: What They Are And What They Aren’t
Trigger warnings are a tool for people with mental (and sometimes physical) illness and disability to avoid, screen, or prepare for content that might trigger emotional, psychological, or physical reactions.
Trigger warnings are not a statement on how important or unimportant your content is. They are not a softening of your content. They are not a sign that you are embarrassed by or ashamed of your content. They are not a signal of any kind about your message except that it may be harmful to people with certain disabilities.
Stop acting like some content is too good or too important for trigger warnings. If you think that, you’re missing the point.
PETITION: Autoplaying Gunshots in Ads is Actually Bad
As many of you know, I have gun violence related PTSD. My main audience is on twitter, but for family related reasons, I have to have my twitter locked right now. So I’m sharing it here: the petition I made for Youtube to stop autoplaying ads with gunshots in them, because they trigger people with PTSD. Here it is! Please, PLEASE sign and share it!
It’s especially important because a lot of people with PTSD use ASMR and other calming videos to help, and then gunshots in ads just make everything worse. So again, please sign and share! <3 Much love to all of you.
I’m nonbinary and take birth control continuously, and it’s been LIFESAVING for me, literally. I used to get suicidal when I got my period. Seriously, I highly recommend it.
My partner Derek and I have a very supportive, strong relationship in many ways, but we had a problem. Derek would jokingly say mean things to me until it got me really down. It wasn’t on purpose, really—he grew up in a family that expressed affection by teasing, so it was a deeply engrained habit. But for me, it was a very real problem. It was out of hand, and it was really hurting me. It got to the point that friends and family were getting worried about how often he was putting me down.
So about a month ago, we made a rule: we don’t say mean things to each other, even jokingly. And it’s going *so well*. It might sound extreme: surely, teasing can be ok in moderation, right? But it’s a lot harder to say “We can say mean things jokingly, but only sometimes” and understand what on Earth “sometimes” is supposed to mean than it is to say “This is the rule: we aren’t mean to each other ever.”
When I came up with the rule, I had some concerns. Would it take the playfulness out of our interactions? Would we still be able to have fun banter? Would we be able to enforce the boundary we set? Is cutting out playful teasing even healthy? But to my relief, our relationship is better than ever. We still laugh and joke. We still poke fun at ourselves, just not each other. Sure, we’ve both slipped up, but when one of us does, the other just says “Hey, you’re not supposed to say mean things to me”, and the first person apologises. That’s the end of it.
Derek has even expressed relief at the new rule, which he agreed to immediately when I suggested it. It’s a good, clear boundary that’s solved what we both knew was a problem. He doesn’t want to hurt me. I don’t want to hurt him either.
The change in our relationship has been overwhelmingly positive. With a clear boundary in place, we talk more freely, not less. We spend more time talking to each other and more time really listening. We’re bonding more and having more fun together. And crucially, we’re not hurting each other out of force of habit.
So if you’re in a relationship where teasing is a problem, I highly recommend trying this out. You might find yourself and your partner or partners in a much healthier place.
“Exposure therapy is good” ≠ “Trigger warnings are bad”
This is a thread I tweeted in all caps, because shouting is good! But I know that’s not accessible for everyone, so I did a transcript here for the people who can’t easily read the original thread.
(TW:ED/suicide)
I guess we’re having the “exposure therapy is often good” ≠ “trigger warnings are mostly bad” conversation again.
Here’s the deal: I’ve done exposure therapy and similar therapy for eating disorders, trauma, and anxiety. I’ve mentioned trigger warnings to 100% of my therapists, and none of them think they’re a bad idea. They’re actually helpful to the process.
See, exposure therapy isn’t just exposing someone to triggers randomly. If that worked, we wouldn’t need therapy. We could just wait.
Alright, so my eating disorders are anorexia and bulimia. (Yes, I was diagnosed. Yes I will fight you. No, I won’t tell you my high and low weights.) Recovery had involved exposure therapy with foods that I used to be terrified of, but if I said “I’m going to purge if I do this”, at no point has a therapist said “NO. We are doing this exercise, and if you harm yourself because of it, that’s just TOO BAD.” Because, see, if they did that, lots and lots of people would die. If I said that, we would have a talk about how was feeling and how I could manage those feelings. We may decide not to go through with it.
With an even moderately ok therapist, there is always, ALWAYS warning about exposure exercises. Always. I’ve done EMDR for trauma, which is essentially a sort of exposure to traumatic memories themselves. Before I started the process, I had an appointment just to determine whether I would be safe to do it. Again, this was for exposure to memories that were already in my own head. No surprises or external stimuli, just thinking about the trauma. My husband had to work from home or take the day off every time I had an EMDR appointment so I would be safe. My therapist required this. I was to tell my therapist if I felt overwhelmed during therapy and needed to stop. I was to say if I felt I couldn’t do EMDR that day. My therapist specifically instructed me to to avoid triggers between appointments if possible, including future exercises for therapy.
Through EMDR, I got to the point where certain triggers are manageable now, even when they’re surprising. But it was cut off. (TW: SUICIDE) In June, my best friend Sam killed themself via a gunshot to the head. I couldn’t stop them. They fell right into my lap. (END TW:SUICIDE)
After that new trauma, I met with my EMDR therapist, and we determined that I shouldn’t continue EMDR while there’s new trauma. Like all exposure based therapy, EMDR is neither intended nor safe for recent trauma.
Let’s repeat that: exposure therapy is not for recent trauma.
Exposure therapy is not. For. Recent. Trauma.
Basically, if you say “No trigger warnings in classes, because exposure therapy is best”, you’re saying that recent trauma means dropping out. And if that’s your actual argument, go fuck yourself. At the very least, frown really hard and shake your head at yourself in the mirror. Then resign from any positions of power you may hold regarding academia, human resources, or publishing policies. Thank you.
Anyway. Exposure therapy. HEY SO it’s not even applicable for some of the things trigger warnings are for. For example, it’s not recommended that an anorexic patient be exposed to triggering material like calorie counts and idolisation of thinness until they just aren’t affected anymore. That’s not how it works. That is not a kind of therapy.
And for some trauma patients, some triggers may never be candidates for exposure therapy. Some may never be safe. What is safe and when is not something you can judge for somebody else. Even trained professionals have to listen to their patients. If someone is a candidate for exposure therapy, they may discuss that with a therapist. Friends, teachers, family, etc are not substitutes. Even if you are an actual therapist, you don’t just apply exposure therapy to people willy nilly. You need information and consent.
Listen: if I wen to my EMDR therapist tomorrow and said “Let’s do EMDR again”, she would refuse, because she’s a good therapist. I would have to be very deceptive and very clever to convince her otherwise. I’m not sure I could do it even then, because she knows it would be dangerous.
As a rule, if you read about something that works when medical professionals do it, don’t just do something vaguely similar to everyone. Exposure therapy helps certain kinds of illness, sure. Heart surgery helps certain kind of chest pain too, but put your saw away.
[At this point, I lost my train of thought for a few minutes because two of my cats got their heads stuck in the shower curtain. They’re fine, but they may do it again at any moment.]
OK SO GUYS
Boundaries are key to any kind of therapy, and arguably the most fundamental boundary is this: you get to choose your therapist. That means that other people don’t get to just interfere with your therapy, and it means that you can’t declare yourself Grand Therapist of Everyone. That’s true even if you’re an actual therapist.
So all you professors whining about trigger warnings because “What about exposure therapy?” Stop it. You’re the teacher, not the therapist. A lot of the students who need those warnings already have therapists. You know, therapists who aren’t you. Asserting yourself as an authority on someone else’s therapy needs is a massive breach of boundaries. You’re being an asshole, and you’re probably impeding the therapeutic process for some of your students who are seeing professionals, asshole.
Therapists and psychologists who oppose trigger warnings (“because exposure therapy!”): think for a minute. Think about how most people interact most of the time. Think about how most of your clients interact with each other the first time you see them. Is it therapeutic? No. No, it is not, because if it were, you would be out of a job.
When we ask for trigger warnings, we’re asking for a very simple and easy to provide tool that allows us to navigate the world more safely. That’s doubly true for people who are going through or may be candidates for exposure therapy, because again, if everyday exposure were the same as exposure therapy, we wouldn’t need therapists.
So for fuck’s sake, stop being intellectually dishonest and think for a goddamn fucking second about what the word “therapy” means. Or, if you weren’t aware of this stuff, then do that next time. No worries about before, you didn’t know. Now you do.
Help people in therapy continue it safely. Help people outside of therapy get to the point where they can get it. Use trigger warnings.
I’ve talked a bit about my friend Sam Ehly, who killed themself just outside my home in late June. Sam was nonbinary, and their last wish was for me to tell people that. So far, I’ve given an interview with Planet Transgender and tweeted about them under the tag #RememberSam. I’d like to keep #RememberSam going on Twitter, both through nonbinary people talking about our experiences and others showing support and acceptance, so please contribute.
But now, it’s time for me to talk about my friend as a whole person. I can’t possibly do them justice, but I owe them this. It’s time to write about Sam.
Slightly blurry Sam laughing, because I took the pic before they could make a goofy face.
Sam and I met because they were a barista/waiter at the café where my husband Derek and I used to have brunch every Saturday. The three of us started talking just kind of naturally, I guess – just silly shit at first, like renaming the menu items shit like Berries McGee. It got to the point that we really had to start hanging out, or we’d lose Sam their job by talking too long. I think one of our first longer conversations was about parasites, (a subject I end up bringing up with most people I know at one time or another), and Sam was interested. We had some other conversations there about gaming. They were one of those people who’d talk about actual things. Books, games, music, reptiles, dinosaurs… whatever. But topics, you know? Not just smalltalk.
I’m not sure when exactly we first had Sam over to our house, but our friendship developed quickly. Usually, the three of us would hang out for a while, playing video games a good bit, listening to music, talking, and taking more than a few trips to Waffle House. We did a thorough search for the organ that the Happy Mask Salesman plays in Majora’s Mask, once. (It’s not there, by the way. He pulls that organ out of NOWHERE, teaches you the Song of Healing, and then the organ is gone. It’s like four times the size of a normal pipe organ, and the room isn’t even that goddamn big.)
I did this, and they immediately demanded that I make it their pic in my phone contacts, because of course they did.
I don’t know how we got close so fast. We talked about everything. We’d have conversations about silly hypotheticals that lasted hours, until we almost peed ourselves laughing. Once, one of us (I don’t remember which) asked “What if instead of semen, people ejaculated coins?” That conversation/joke lasted months. Where would the metal come from? What would determine the currency? How would scrotums be shaped? I still have some sketches and diagrams we drew about it somewhere. Sometimes our conversations took the form of a sort of oneupmanship of absurdity, a contest to see who could endure the silliest and most pedantic depths of our analysis. Nobody ever won.
I think one of the reasons we connected so quickly was our views on superficial self injury. Sam used to cut themself, mainly on their upper arms. I still do. Neither of us had any intention of quitting. It’s a very taboo subject, and it’s very difficult to find someone who will listen and empathise without trying to change you, to persuade you to stop. Had they wanted to try to stop, I would’ve supported them in that, and they would’ve done the same for me. We told each other that. We showed each other a very rare form of support and compassion that way.
I know some people will call that enabling, sickness, and perversion. Some people might think I shouldn’t mention something so supposedly sordid. Some people might be very angry with me for talking about it publicly. But Sam wouldn’t’ve minded. Sam talked about everything. When asked about taboo subjects or politics, they’d say “It’s the world we live in.”
We both struggled with depression for most of our lives. They listened patiently and understandingly when I told them about my eating disorder. There were struggles, like my eating disorder, that we hadn’t both experienced, but sometimes our pain and our thoughts were so close that it was almost unsettling. Sometimes when they spoke, it was like hearing my own pain escape from someone else’s mouth. Each of us said things the other wasn’t sure how to.
I won’t pretend we always agreed. As two passionate, talkative, opinionated people will, we argued. Sometimes we reached agreements, and sometimes we didn’t. But we could say “Stop.” if we needed to.
We discussed gender on quite a few occasions, although when we met, Sam identified as a man (albeit very uncomfortably). I mean, I’m a transgender activist. It obviously came up. Early in our friendship, they mentioned being frustrated with masculinity and the expectations of them as a man. We talked about toxic masculinity and such. I talked to them about my own gender dysphoria and frustration with being perceived as a woman. They talked about hating Boy Scouts.
Something I always loved about Sam is that when they found out about oppression they weren’t aware of, they didn’t deny or defend it. I’d mention something I’d often experienced as a disabled person or a trans person, such as people refusing to use my pronouns (they/them) and abled people questioning me about my cane, fully expecting to have to explain why it was a problem, and I rarely needed to. Their reaction usually wasn’t “Why’s that such a big deal?”, it was “Holy shit, people do that?” They learned about their own privilege very quickly, showing a capacity for empathy that I’ve rarely seen in anyone else. They often feigned disinterest in the wellbeing of humanity in general, but it very quickly became clear to me that this was a thin facade, an effort to protect them from the burden of the pain of seven billion people, to rest amidst a battle that was impossible for them to truly ignore.
Gender started coming up more, first gradually, then much more frequently. I admit that I (regretfully) assumed that Sam was a man when I met them, and I continued to do so until not long before their death. The way they talked about their gender gradually became more open and questioning. First, as I mentioned, it was frustration with masculinity. Then they started talking about how uncomfortable they were with having a masculine body. Then it was “I’m ok with being a man, but I really wish I were more feminine.”
When talking about experiences with gender and privilege, I assumed they were a man and referred to them as such. It was in such a conversation that they finally told me: they weren’t a man. They’d never been a man. And they couldn’t bear to pretend it to me any longer.
It wasn’t the first time I’d seen Sam cry, but their tears that night were powerful, hopeful, and healing in a way that I hadn’t seen before. I held them, and they told me about how they’d known they weren’t a man for years, how wrong it had felt, and how isolated they were without the words to express their certainty that they weren’t a woman either. Like many nonbinary people, Sam spent most of their life feeling like they were the only person who felt that way about their gender. In their case, I was the first nonbinary person they knew.
At that point, Sam very nearly lived with Derek and me. They slept on our couch most nights, leaving for work and occasionally to spend time with other people or feed their turtle, Uriah. They lived in our house for a week when we were out of town, caring for our cats and texting with me pretty much constantly.
It was an exciting period of self discovery and experimentation, but also a very frightening one. I remember Sam telling me “This is the only place where I can be myself”, and “Thank you for letting me be me with you” many, many times. Really, I wish there hadn’t been anything to be grateful for. I wish they could’ve lived that way everywhere.
We talked about options: pronouns, identities, expression, fashion, hair… all those changes, big and small, that can make a difference in our lives that I don’t really know how to explain to cis people. We experimented a bit with makeup. We looked online at skirts and things. Derek, Sam, and I were closer than ever. On June 26, I remember that Sam made us dinner, and we all decided that they’d move in. We were all really excited. Sam wouldn’t have to work difficult, low paying jobs anymore (they’d recently lost their job, which was a major source of stress and pain). We could afford to support them, as long as they helped around the house.
But as I said, that period of self discovery is scary, too. I can’t say exactly why it happened when it did. I have the last drawing they ever did (Sam was a fantastic artist), which I believe shows that they were thinking of suicide by the method they used earlier that day. I’d rather not go into detail about the exact events leading up to their death. I hope you can understand that.
Sam’s last drawing.
Sam died by a gunshot to the head at about 1 AM on June 27th. We talked a lot before they did it. I tried very hard to stop them. And while gender obviously wasn’t the only topic causing Sam pain, it was the main topic we talked about that night.
We talked for at least an hour after they got the gun from their car. They were decided already, I think. Despite the positive changes just ahead, they didn’t think they’d be able to keep going. They didn’t think they’d be safe. They told me very clearly that they wanted me to tell people about their gender, about who they really were, because they couldn’t live as a man anymore. They were facing very real fears: rejection, ostracisation, and the weight of a system of oppression and a world of pain that the walls of our little house and the arms of a few friends couldn’t protect them from.
I always knew that Sam would most likely die by suicide someday. We talked about it a lot. I encouraged them to get professional help if they could. I listened as a friend. I did what I could. They wanted to die on their own terms, and I understand that. Like me, Sam was so afraid of death that they sometimes just wanted to get it over with, to leave the fear.
I thought we’d have a lot more time. I thought things were about to get better. I’d heard before and have been told since that it’s not uncommon for people to commit suicide just as things are improving. Any major change, including positive change, can be a trigger for depression and suicide.
Before they died that night, I said… everything. Everything I could think of. I told them that I knew their pain was real, but that it wouldn’t be unbearable forever. I tried to persuade them to come inside and talk for an hour, 30 minutes, 15 minutes, 5 minutes… For a while, I wrapped my arms around their head so they couldn’t do it without injuring me too. I remember crying and saying “I love you, please don’t do this, I love you” over and over. I remember the moment when they pulled the trigger, and I remember the last things they said.
“Tell Derek I love him. Don’t let me die as a man. I love you. I’m sorry. I love you.”
And then they fell into my arms.
There’s a lot I could say about how they’ve been misgendered and disrespected after death. There’s a lot I already have said, along with many others who’ve watched their loved ones be subjected to similar disrespect while they mourned them. I’ve lost count of how many people have contacted me with similar stories of the identities of their beautiful, unique, absolutely irreplaceable loved ones being denied and erased after their deaths.
Don’t let them erase any more of us.
Don’t let them erase Sam.
If you’re a trans person considering suicide, consider contacting Trans Lifeline, a crisis hotline for trans people that’s staffed by trans people, including several nonbinary people.
Sam Ehly was nonbinary. Don’t let them be forgotten.
Hello, lovelies.
About a month ago, I witnessed my close friend Sam’s suicide. This is going to be a bit matter of fact, because I don’t really have words for my grief and love for them right now.
Sam wasn’t out yet, and they left me with a task: they asked me to make sure they won’t be remembered as a man. I did an interview about them for Planet Transgender. Please read and share it. Their obituary and eulogy misgender them. Don’t let their identity get erased.
I’m going to write something more personal thorough later, but I’m not ready yet. In the meantime, you can see what I and a few others have said by looking at #RememberSam on Twitter. Please contribute to the tag with support for nonbinary and genderfluid folks, and if you’re nonbinary, it would be awesome if you’d use the tag to talk a bit about your experiences with gender, stigma, depression, and whatever else you think might be relevant. Sam would’ve liked that.
Please, please do your best to survive, whatever that means for you. I’m mentally sending love and glittery, extra queer sprinkles to all of my trans comrades.
Update: After the Specialist, Things are Vaguely Better
Previously: Fear & Terrible Hope: I’m going to a specialist for my chronic illness
I never updated you guys on what happened at my visit to the autonomic dysfunction clinic, and it’s been a couple months now! Sorry about that. I felt too overwhelmed to post about it at first, but here’s what happened, as it was explained to me:
First of all, the specialist immediately accepted that my syncope is not from anxiety when I explained that my anxiety symptoms feel different from my physical ones. That should be standard practice, but it’s not, and I’m extremely relieved that I didn’t have to argue about my own perceptions again. In my experience, the more a doctor knows about my syncope, the less likely they are to go “WELL maybe it’s stress?”
I’ve been diagnosed with Neurally Mediated Syncope, which is consistent with my previous diagnosis, but isn’t particularly good news. Apparently my heart rate and blood pressure don’t have to do anything particularly uncalled for for me to get dizzy or pass out; my nervous system just has a shit fit in response to relatively small changes sometimes. The bad thing about that is that it’s hard to fix. They said a pacemaker won’t help, but compression stockings, salt, and hydration might help. I’ve also been instructed to see an ENT about my vertigo.
I had two appointments, both on the same day: one for diagnostic purposes, the other to evaluate the results. Since the clinic’s research turned out not to apply to me, I was sent home after the second appointment, and I was devastated. There was no big new hope, no dramatic change in prognosis, no experimental cures. I figured at the time that the most significant bit of new information they gave me is that I’m not legally allowed to drive, since I sometimes lose consciousness sitting down (which is a sensible law, but not an encouraging one).
But more has changed than I expected. I’m taking in 6 to 9 grams of salt a day (as per the doctor’s orders), and it seems to be helping. I can walk more than I used to (with my cane, of course), and that’s immensely hopeful for me, especially as I can’t drive. I used to go on very long walks, and getting a little bit of that freedom back makes me feel less trapped.
I think the best change has been the reduction in stress after the appointment, though. I’m still disabled, and regardless of physical improvement, I want to learn to be happy the way I am. Doctors, nurses, counsellors, and therapists have fought me constantly about focussing on my happiness, rather than a ~*~*~*~*cure*~*~*~*~, and I’m done putting up with it.
Dear Carolyn: One of my friends has had fibromyalgia for the past year. It makes me sad, and so I like to find alternative treatments and cures and tell her about them. She’s gotten really annoyed with me for doing this, but I am only trying to help and I think she...
This is the first thing I’ve reblogged on this account, but goddamn, this exactly. Nobody fucking cares what your yoga instructor (who like totally changed your life) said about their chronic illness.
Terms We Need: PPW/PPM (people perceived as women/men)
In discussion about sexism, harassment, abuse, and other gender related topics, it can be really hard for nonbinary people to express our experiences. I’m nonbinary, but strangers nearly always perceive me as a woman, so I still experience misogyny and harassment that’s almost exclusively discussed in terms of men and women. So here are some terms to help with that:
PPW: person perceived as a woman (or people perceived as women)
I’m a PPW, as are many AFAB and femme nonbinary people, some trans men, etc. “PPW” applies to anybody who’s not a woman but is usually seen as and treated like one.
PPW has been useful for me for talking about issues like gendered street harassment, which happens to people based on their perceived gender, not their actual gender. In my experience, many aspects of social interaction, dating, and etiquette have a lot to do with my perceived gender, even with people who know that I’m not a woman.
PPM: person perceived as a man (or people perceived as men)
PPM include some AMAB or masculine nonbinary people, some trans women (especially trans women who don’t or can’t always present as women), some cis women, etc. It’s analogous to PPW.
I haven’t personally used PPM as much as PPW because I’m not perceived as a man, but several people on on Twitter requested that I include it. I hope people perceived as men will find it useful.
Saying “women and PPW” (or “men and PPM”) instead of just “women” (or “men”) includes people who are frequently misgendered. We’re often excluded from important conversations where gender neutral language wouldn’t really work, because gender is relevant (eg street harassment, rape culture, fatphobia, and objectification).
Fear & Terrible Hope: I’m going to a specialist for my chronic illness
On April 2nd, I’ll finally see a specialist at the Vanderbilt Autonomic Dysfunction Center. I’ve been waiting for months, and now that the appointment is approaching, I’m terrified.
My life since I was 14 has been shaped by my physical disability, especially as it’s gotten worse in the past few years. I faint unpredictably about twice a week, and I have some degree of vertigo, weakness, and fatigue every day. I can’t stand for long or walk much, and when I’m not using a wheelchair, I use a cane for balance.
Now, for the first time in years, there’s a real possibility that someone might be able to help. None of my other doctors have been able to. I’ve been through an exhausting, years-long series of appointments, tests, medications, EKGs… all to be told that “maybe it’ll get better on its own.” So the idea that something might actually work is very strange.
I have a lot of fears about the appointment. What if my initial diagnosis (neurocardiogenic syncope) turns out to be wrong, and I have to start over? What if they don’t believe me? What if they can’t help? What if they can help?
Strangely, that last question is the scariest right now. I want so badly to be able to do more, and hopes that I’d given up on and stowed away in the back of my mind are bubbling back up. The word “maybe” flits through my thoughts uncontrollably. Maybe I’ll be able to drive. Maybe I’ll go on walks again. Maybe I’ll even be able to run. Maybe, maybe, maybe. I have so many delicate hopes creeping out of hiding, and I don’t know how to push them back down. I doubt that the clinic will be able to help that much, but I really have no idea. I don’t know how likely these maybes are to be crushed, and I don’t know how to stop hoping so much.
I’ve spent so much time and so many thoughts learning to accept myself and be happy the way I am, trying to understand that my life now is worthwhile and valuable, even if I never get better. I’m so afraid that the progress I’ve made will be undone by my own traitorous hope and eventual disappointment. Hoping takes a lot of energy. I try not to do too much of it, because I don’t have much energy to spare. I’m not saying that I’m hopeless, just that I try not to dwell on things that aren’t good for me to dwell on.
I have a lot of support through my husband and friends (many of whom I know through Twitter). I’ll survive. But in the meantime, I wish I could get some rest away from all of those buzzing, tantalising maybes.
Please stop saying "Don't let your disabilities define you!": An Open Letter to Almost Everyone
Hi, abled people!
Today on Twitter, I saw a series of tweets by @shufflejoy that I wish all abled people would read and think about:
It's important. People, particularly abled people, try to separate disabled people from our disabilities a lot. For example, if you tell me (like many abled people have) "You're not your autism!", "You're not autistic, you're a person!" or "Don't think of yourself as disabled", you're separating me from my disabilities. The same is true of "I don't really think of you as disabled", "Don't let your disabilities become your identity", "You're a person with autism, not an autistic person", and "Your disabilities don't define you!"
I can't speak for all disabled people, but I can tell you how this affects me, and I can tell you that I'm not alone. (Look at some of the replies to the tweets I linked to, for a start).
When you say those things, you probably mean well. I know that. You probably think you're being kind. Maybe you think you're being encouraging. To put it bluntly, you're not.
As Shufflejoy pointed out, disabilities that affect us every day aren't things we can just abandon or separate from ourselves. I'm not completely defined by my autism, ADHD, and physical disabilities, but all of those things affect my experiences every day of my life. They're part of what defines me as a person. They're part of my identity.
When I was in recovery for anorexia/bulimia, one of the therapists would often say "Your life is defined as the majority of your thoughts." And you know what? I think about my disabilities almost constantly. I'm not complaining – I'm pretty comfortable with that, although I do wish I lived in a more accessible world, which would make it a bit less necessary.
I think about whether I have enough time and energy to do what I want without getting sick for days (see The Spoon Theory by Christine Miserandino). I think about how I physically feel. I think about what activities will be practical and safe for me today, and how to prioritise them. I think about my autism – about the metaphors and phrases I don't understand, the textures that make my teeth hurt, the textures that sooth and enthrall me, the way the sound of suddenly ringing bells or shouting makes my spine tense painfully, the wonderful repetitions and rhythms around me and in my mind – countless things that define how I feel and experience.
I can't ignore that. I don't want to ignore that. When you treat my disabilities as something separate from me that doesn't define me, you deny the power and overwhelming significance of those experiences in my life.
I think Shufflejoy is right that for many people, it's a reassuring way to think. It lets you pretend disability isn't significant. For abled people, it means that you don't have to think about it. For disabled people, it's often not practicable long term. I used to try. I tried to make my disabilities an afterthought, and it didn't work. I ended up trying to do more than I could and getting very, very sick. I used my eating disorder to relieve the anxiety from constantly trying to hide my autistic traits. I made promises I couldn't keep, because however much I try to ignore them, my disabilities really do limit me.
And when people dismiss that, they often end up blaming me for my limitations, saying I'm "letting disability define me". No. I'm surviving. I'm living. It's not my fault that I have physical limitations. It's not my fault that my brain works very differently from most people's brains (and I like my brain, thank you very much). No amount of willpower or ~*~*~believing~*~*~ is going to change that.
Identifying as disabled and autistic is a way that I take ownership of who I am. I'm not insulting myself, because disabled and autistic aren't insults. I'm not letting it define me – it defines me either way. I'm owning it.
When I say "I am disabled", that isn't self pity. I'm not giving up, showing low confidence, or calling myself weak. I'm strong, worthy, powerful, and disabled. I'm loving, compassionate, determined, and autistic. These aren't contradictions: I'm stating and owning who I am. After a lifetime of being told my disabilities are weaknesses, I'm being strong without denying them. This is empowerment.
I've talked to countless disabled people who feel the same way – not all of us, but many. By saying "We are disabled", we're claiming ourselves, our bodies, our brains, and our needs.
Dear USDA: Can We Not Teach Children to Count Calories?
(TW: eating disorders, diet culture)
Note: You can contact the USDA about this here or here, or tweet at @USDA. We need to let them know this isn't ok.
While searching for some information about eating disorders the other day, I found Nourish Interactive, a website with games for kids, resources for parents and educators, and teaching materials, all to teach children about nutrition and healthy living. The site brags that it was recommended by the USDA on their list of "Best Online Info Sources" for obesity.
And ok, I didn't expect it to be great, but I also didn't expect fucking worksheets literally teaching elementary school children to count calories. (I could keep going with the links, but I think you get the idea.) Here's an example:
Notice the recommended age.
Seriously.
The games on the site include a talking BMI calculator for children, which doesn't tell kids their actual BMI, but it does tell them if they're not exercising enough, based entirely on BMI. As far as I can tell, it doesn't recommend less exercise under any circumstances.
BMI is bullshit pseudoscience anyway, but this calculator doesn't even follow it properly. Out of curiosity, I put my height and goal weight from when I was anorexic into their calculator (age 16), and I was told my body was "getting enough fuel" and to "keep being active". Again, this was with no information about my diet, activity levels, or health. There's a screenshot (WARNING: HEIGHT/WEIGHT NUMBERS) here. By the way, I never reached that weight. I ended up in the hospital first.
I'm concerned about teaching kids to count calories regardless of their weight. Actually, "concerned" is the wrong word. I'm angry. I'm enraged.
I was taught to count calories in a 9th grade health class. I was about 14 years old. My relationship with food was already unhealthy, but my teachers didn't know that. That class gave me the tools for my eating disorder to flourish. To this day, I can't read food labels, because I'll start counting calories automatically and end up starving myself. If I'd been taught when I was 9, I'm not sure I would've survived it.
Like many people with eating disorders, I was taught at an early age not to trust my body to tell me when I was hungry or full. For me and many of the people I was in ED recovery with, learning to trust our bodies and stop listening to outside signals (eg calorie counts) to tell whether we should eat. By teaching children to count calories, we're teaching them to rely on numbers to tell them what their bodies need. We're teaching them not to eat when they're hungry and stop when they're full. We're teaching them to disconnect with their bodies. And we're giving them very effective tools to develop and perpetuate eating disorders.
Some people are already prone to eating disorders. I'm not sure those kids even have a chance anymore.
What Not to Say to People on Meds: ADD/ADHD Edition
My first post about meds is here.
This time I'm focussing on ADD/ADHD (which I'll refer to as ADHD, the "official" medical term, for the sake of convenience). I have ADHD, and a lot of people are horribly inappropriate about it. So here are a few examples of the kind of thing people need to stop saying.
Oh wow, I've never heard that before! Except, you know, almost every time I mention having ADHD.
If you say this, I'm on guard for you to question my diagnosis and experiences. That's not unreasonable, because people do it all the time. And it's kind of baffling to me that anyone thinks it's ok. I've thought about my brain and my experiences more than you have. I'm sort of surprised that I even have to say that. You aren't qualified to determine whether your friends, family members, and acquaintances have ADHD, and approximately 0% of humans appreciate your input on the issue. What you're saying is "You might think you know how you experience the world, but actually, I know better." It's arrogant, invalidating, and so common that it actually makes it hard to get accommodation or self advocate.
If you think it's an interesting conversation topic, debate, or social issue, it's still a wildly inappropriate thing to say. For people with ADHD, it's not an interesting abstract conversation: it's a deeply personal conversation about our actual lives. People who don't have ADHD get to decide whether and when they have debates about ADHD. People with ADHD don't. If I talk about a very fundamental part of my life, request necessary accommodations, or even just take a pill in front of other people, I run the risk of being dragged into an emotionally exhausting debate. And by the way, I've probably heard all your arguments already. I haven't heard a new argument about ADHD in about 15 years, and I'm 24.
2) Almost anything containing the word "yoga".
I'm considering renaming this series "SHUT UP ABOUT YOGA". So far, 100% of disabled, mentally ill, and chronically ill people I've mentioned that title to have said "DO IT." Here's why: we all know yoga exists, and most of us have had it suggested to us as the solution to disability etc ad nauseam.
I get it. I know. You did yoga and it totally changed your life! Your instructor is so amazing, and this one time you had an amazing emotional breakthrough in class. You're pretty sure yoga can cure basically anything and that ADHD is mental anyway, so inner peace or some shit should fix it, right? I know. WE ALL KNOW. You can stop telling us.
If yoga fixed all the difficult bits of ADHD, we would do that. It'd be way easier than what we're doing now.
P.S. Maybe don't suggest yoga to someone sitting in a wheelchair. Are you five? I can't do yoga.
P.P.S. Of course I've heard of wheelchair yoga. I can't do that either.
3) "ADHD meds are street drugs!"
So are those pills your dentist gave you when you got your wisdom teeth out. What's your point?
4) "WHAT ABOUT THE CHILDREN"
I've been taking stimulant ADHD medication since I was five years old, and I've spent exactly zero seconds of my life regretting it. That makes a lot of people uncomfortable, but when it comes to personal and medical decisions, I prioritise my wellbeing over their comfort. Except for a brief break, I've also been on antidepressants since I was 11, by the way. They saved my life. Deal with it.
Of course, that's not everyone's experience with medication. I realise that, and bad experiences are valid and important. But there are a lot of people who are helped by ADHD meds, and in my experience, that's very rarely validated. It's not as sensational as the idea that we're turning kids into zombies, but we're not here to entertain you. We're people.
5) "It's just BAD PARENTING."
Remember how you were there the whole time during my childhood? Yeah, me either. Pretty cool how you're telling me your unsolicited opinions about my parents, though. You're being really interesting right now.
If ADHD is just bad parenting, it's sort of weird how both of my parents, whose parents had very different parenting styles from them, just happen to have it. Pretty weird that so many people are diagnosed as adults, too.
And anyway, if we had pills that significantly helped with the effects of bad parenting, that would be amazing. Why would you be against that? Do you have a grudge against people with incompetent parents or something?
General Advice:
Don't give unsolicited advice or input about other people's ADHD. Listen. Validate. Act like a human being talking respectfully to another human being. Before you give advice, ask yourself if you're qualified to do so. Then ask yourself if you're actually helping or just making yourself more comfortable.
You know how some vegetarians lecture their meat eating friends about diet, and it's terrible? When you give unsolicited advice and opinions about medication, you're being that guy. You're being the worst version of that guy.
So when someone mentions ADHD, don't be a dick. If you don't have it, you probably have no idea how discouraging it is to constantly deal with denialism and invalidation about it. Calm down, back off, and let people with ADHD talk about our experiences without people who don't have it constantly talking over us.
Five Things You Shouldn't Say to People who Take Meds
TW: mention of suicide (no gritty details)
Note: Don't worry if you feel like I've missed some points particular to ADHD: I'm doing another post later that focusses specifically on ADHD meds, since that stigma is particularly intense.
I take psychiatric medication daily, and I'm very open about it. I have two reasons for that: 1) I don't see my medication as shameful or secret, and 2) I don't think anybody should have to feel ashamed of taking medication, and talking openly fights that stigma.
But as someone who talks about their medication, I get a lot of unsolicited advice and comments about it. In fact, it's not just when I talk about it: sometimes near strangers (and occasionally actual strangers) gift me with their words of misinformed "wisdom", anxiety, and/or disgust. Thanks, guys! I always love hearing about those opinions. No, really. I was positively shaking with antici–
People have suggested so much uninformed bullshit to me that I can't keep track of it all anymore: magnets, yoga, B vitamins, more caffeine, less caffeine, St John's Wort, ear candling, exercise, essential oils, massage, chiropractic, fasting, juice, cannabis, special diets…
You get the idea.
Don’t give advice unless you’re asked for it, including when the person you're talking to mentions their medication first. Disabled, mentally ill, and chronically ill people are experts on our own experiences. A lot of us research our conditions and symptoms extensively. Chances are, the person you’re talking to has already researched or even tried what you’re suggesting. It’s very likely that they’ve heard of it, because we get unsolicited advice constantly. Trust me, we all know that yoga exists. People keep telling us.
People taking medication probably know more about our meds than you do. That seems obvious, yet I’ve had people give me unsolicited “advice” without even knowing the names of my medications. Don't do that. Shhhhh. You're embarrassing yourself.
2) “Taking pills is the easy way!”
Ok, look. Mental illness, learning disabilities, and other psychiatric conditions aren’t obstacle courses or life lessons. “The easy way” might be less admirable if you’re an athlete, but when it comes to coping with everyday life, easier is better, unless it leads to harm that makes it so it’s not worth it. If medication is makes life easier, that’s a good thing.
And anyway, the “hard way” isn’t always possible. Many mental illnesses and disabilities affect motivation in ways that we can’t control by ourselves, so trying harder isn’t always a realistic option. I have Major Depressive Disorder, and when my depression is really bad, I have no motivation to get better or do anything productive. Trying harder isn’t an option when there’s no impetus to act. I can’t will myself to be more motivated, because doing so would require motivation. If I didn’t have psychiatric medication, I would’ve killed myself years ago, which is also supposed to be “the easy way”.
In other words, scoffing medication because it's "the easy way" is a bit like scoffing at soldiers for taking rifles into battle instead of muskets. This struggle isn't about machismo or proving our strength, it's about survival.
3) “Do you really want to take meds your whole life?”
Yes. I have consistent access to my medication, and I have no reason to want to discontinue it. I’m comfortable with that. I feel like that’s really all there is to say about it. Questions? (note: many people who take medication have problems with access because of financial problems or other issues, but sometimes the benefits of medication outweigh the risk of having to discontinue it.)
3) “Do you really want to be dependent on a pill?”
There are two interpretations of this one, because dependent could be referring to chemical dependence, or it could just be the way I’m dependent on other people and what have you. First of all, chemical dependence is NOT the same as addiction. Let’s just get that out of the way. Chemical dependence means that you need a medication to avoid withdrawal. That’s it. Some drugs that cause chemical dependence are addictive, but with many prescription drugs, such as antidepressants, that’s not the case.
Now that that’s clear, I can answer the question properly. Yes. I’m ok with that for both definitions of dependent, and so are a lot of other people who take medication. When possible, I prefer medication that doesn’t cause chemical dependence, because that way I don’t have to worry about withdrawal if I forget to take it or have to stop. But that’s not an option for some of my medication, and I’m ok with that. Fluoxetine (Prozac), for example, can cause withdrawal symptoms if discontinued, but that possibility is far outweighed by the benefits, like being able to continue living and having fewer flashbacks.
4) “You’ll be stronger if you did it by yourself.”
No. No. I’ll be stronger if I’m alive and well. Like I said in #2, mental illness isn't a training regimen or adventure meant to improve or teach us. Life is rarely that comfortable and convenient: real people's lives aren't neat stories with clear morals. Mental illness and other disabilities don't conform to any particular narrative. Some people get better. Some people don't. Some people find support and ways to cope but are never completely free of symptoms. And you know what? Every one of our lives is valid and valuable, whether we get better or not. We're not here to inspire you. We're not here to conform to your arbitrary definition of strength. We're trying to live our lives.
5) “Did you forget your meds?” (especially to someone who’s upset, angry, etc)
One word: invalidation. And condescension. And overstepping boundaries. And… ok, so a lot of words. But invalidation is a really, really important one. It’s frustrating for much the same reason “Is it that time of the month?” is. It tells us that you aren’t taking us seriously, and it’s a personal question you shouldn’t be asking. It’s particularly frustrating when we’re talking about ableism or other injustice, in which case it’s a way of directly dismissing people due to disability. Really, that’s the core of why you shouldn’t say it: it’s a way of saying that you doubt the validity of our thoughts and feelings because we’re disabled.
Note: Obviously, if you've specifically had a conversation with someone close to you where they told you that they'd like you to remind them about their medication (or at least don't mind it), that's ok.
I have to admit that I'm pleasantly surprised! I didn't really expect Samaritans' response to be so favourable, but this is extremely encouraging. I thought they'd probably make adjustments instead of taking it down, but they've done the right thing. A lot of my respect for Samaritans has been restored, although they may not recover everyone's trust for a long time.
It's not about me, but still, thank you so much to everyone who's worked to bring it down, even if it was just one petition signature or tweet. It wouldn't have been possible without a lot of voices speaking out.
I'm so excited, guys. I'M SO EXCITED. I'm flapping all the autistic flaps right now.
