Reading this Twitter thread and thinking about the conversations we’re having in evaluation about being human and bringing our whole selves to our work made me really want to talk about being disabled and an evaluator.
But I have no idea if I’m disabled.
Am I?
I’m writing this in bed, with my trusty heating pad and medication I will take every four hours, the maximum safe dosage allowable, for the next few days. I am experiencing pain that, when it peaks, makes it hard to focus or stay coherent or do anything but gasp. And when it subsides again it stays uncomfortable enough to be distracting and make me not want to do much besides lie in bed with a heating pad, a snack, and a distraction. The pain comes bundled with other symptoms that make me want privacy and safety and assured access to the things I need to be comfortable. Before learning about these chemical heating pads a couple years ago, something like this would have meant cancelling any in-person meetings or taking a day home from work. (One more reason I prefer not to work in offices, even before the pandemic.)
This is an improvement. When I was a teenager, the pain was vicious. I missed school. I threw up. I blacked out. I lost control of my body. I cried and told my mom not to stroke my hair because it hurt. Everything hurt. The medication I took then was stronger, so strong I can’t take it anymore. But mercifully the pain has tapered down from a regular 10 on the debilitating pain scale to a 7-8.
This is the only diagnosis that I have. Primary dysmenorrhea, cause unknown. It might as well be a question mark. Because it’s a condition that affects primarily women, and the reproductive organs typically associated with women, it’s under-researched and poorly understood. When I was fifteen, my family doctor joked, “Well, the one guaranteed way to clear it up is to get pregnant!” I waited it out instead, mostly in silence and in private. I rarely speak about it outside of careful euphemisms, and only then out of the sheer necessity of asking for accommodations. (I made the mistake once of mentioning to some fellow staff at a job that I had my period and wasn’t feeling great, and watched a man I respected and cared about turn abruptly and silently walk away as if I had uttered something so offensive he couldn’t bear it. He never apologized and I never told him how much it hurt.) I built my life around the (only semi-predictable) rhythm of it, the management of it, staying safe. I’m not a fan of long camping trips and uncertain accommodations. I always have a strategy around needing to cancel or bail on something last minute. I look for privacy and predictability in how I travel. I’ve had enough privilege to make that happen so far.
So that’s the thing I’ve had diagnosed.
Then there’s the rest of it.
I was eleven or twelve the first time I told someone (my mom) about being depressed and suicidal. I remember because I knew it was a big deal to bring it up. She was concerned. She talked to her minister. No one knew what to do, least of all me. Nothing came of it. My grades were good and my pain was quiet. And when it wasn’t, I was a “good kid” (a.k.a., white, middle-class), so I got a pass. No stigma, no punishment, and no help either. I learned to navigate panic attacks without knowing what they were. I shrugged off things I didn’t know were PTSD symptoms as weird teenager stuff. I kept it to myself. (Too bad the dentist never mentioned the severe teeth-grinding as a possible symptom of untreated anxiety, or even mentioned it at all—all that damage is going to come back and bite me in the ass someday. Or gum it, at least.) When I went through that ‘weird’ phase in my twenties where I just couldn’t stop crying but had no idea what I was crying about, the EAP counsellor I saw through my mother’s work benefits suggested loneliness and that I join a club. I did community theatre. I loved it. Didn’t actually help, but I enjoyed it.
Dissociating helped though. School was great for that. Lots of structure, plenty of distractions, a reward system that I was rocking (being white and financially-privileged helped a lot here too), and a good long-term solution since it could occupy decades and decades of my life if I took it all the way. And psychology turned out to be a fantastic discipline for looking out at the world without reflecting on yourself or remembering that you have a body, past, or identity (I mean, you can, but no one will make you and some people will grade you down for it). I stopped writing poetry and short stories and focused my creativity on designing experiments and developing research programs. I swapped speculative fiction for textbooks. I took classes in clinical and abnormal psychology and blissfully never once recognized myself in any of the abstracted diagnoses I studied, despite qualifying for a few of them. No one said I had to do school this way, but it was easier than being in pain all the time and my grades were great (for a while), so no one was complaining either, least of all me.
If you’d asked me at any age up to about twenty-six if I’d ever significantly struggled with my mental health, I’d have confidently assured you that I hadn’t. I’d learned about real disorders and no one had ever diagnosed me with one of those. I’d have also assured you that I didn’t grow up with a traumatic childhood, that I was a woman, and also as neurotypical as can be. (Oh geez, and I didn’t even touch on the disordered eating and dysmorphia, did I? It gets all tangled up in the trauma and gendering and sensory processing and executive dysfunction. Never showed up as neatly as it did in the books I was given as a slightly chubby pre-teen in what I imagine must have been some kind of preventative intervention that mostly just confused me and gave me cool tips on how to hide having an eating disorder.)
Anyway. Turns out trauma, dysphoria, and feeling like a constantly-overwhelmed alien creature in a strange and hostile environment are good predictors of uncontrollably crying on buses. Also it turns out that knowing these things are part of the fabric of your life doesn’t unweave them from it.
Is this disability?
Other things come up. It’s all tangled together. Treating myself like a brain in a jar all the way through grad school turned into chronic back pain. Pairing that with the unleashed tidal wave of repressed and ignored emotions and my retreat into the safety and comfort of prone positions (a.k.a. lying down all the time) on top of a lifetime of under-treated chronic physical ailments (itself the product of it being hard to have a healthy relationships with your body when you exist in a societal context that is hostile to bodies in general and also when your body has nearly always been an scary and confusing place to be for several reasons all at once) caused the muscles of my feet to seize up so badly I was unable to walk without pain for months (and the effects have lingered for years after that). Walking is one of my go-to ways of managing my mental health, and losing access to that made things harder but also forced me to find other ways to cope, including talking to people about it and asking for help. That’s been powerful and empowering, and at the same time exhausting. I spend a lot of time coping and compensating. I am careful about boundaries and rest because I’m aware of the consequences if I’m not, and because I can be.
Coming to work with my whole self means coming with my whole self. The parts that hurt. The parts that struggle to function. That can’t sometimes. That need to lie down. That need time. The parts that remember crying, blacking out, and not feeling safe or together or okay. The parts that know we don’t speak of these things, of any of these things. And when I do the work the way I feel called to do it, when I bring my whole self, it brings all of this and asks me to reckon with it, hold it, sit with it. Healing is an endurance test. There’s a tissue-box-to-human ratio in my house of 5:1 for a reason and it’s not seasonal allergies. Falling apart on my way to being whole.
Maybe. Or maybe it doesn’t go away. Some things are just the things we live with. Seeing every disability as a condition to be cured and a tragedy if it isn’t or can’t be is part of ableism.
But is this disability?
One of the weird things for me about the pandemic was how somethings actually got a little better, a little easier. Suddenly there were people were talking about feeling the way I feel a lot of the time. The world got slower (for some). Staying home all the time and wearing comfy clothes became normal (for some). It became more okay to talk about being scared, angry, upset, overwhelmed, and to “be human”. Suddenly, at least for a little while, it was mainstream to organize your life around surviving instead of producing (though in a capitalist context, our main mechanisms for “surviving” still strongly depend on exploited labour, we just temporarily reduced the burden of exploitation for some while maintaining and increasing the burden for others in ways stratified by race, class, gender and more).
My friend Erin wrote about something similar in an Instagram post shortly after the global pandemic was announced:
“Vulnerability has blossomed into a popular virtue in the last while. The guru of vulnerability, Brene Brown, has given us a way to respect and admire, and cultivate it—when it’s emotional. When it’s optional. But when it’s physical? When it’s forced on us? Ahhh.... well now we’re in the territory of the disabled. We’re the gurus. The social isolation, the process of coming up with creative ways to handle uncertain and indefinite constraints, the constant mental math of wondering how seriously to take a thing while still being able to take pragmatic precautions but also not torture yourself with disappointment, panic and overwhelm. The immutable reality that you have no control and no way left to convincingly pretend you have control—it’s familiar territory to us. We are watching the world around us contend with these experiences for the first time and feel for the stress and pressure and bewildering level of personal responsibility people now have to navigate.”
We spoke about how it was in a way delightful to see how people who didn’t normally need to were adapting and figuring things out and making it work. To watch mutual aid and pods and systems of interdependence flourish. I found I had useful advice to give about crying self-care (HYDRATE) and navigating emotional breakdowns, and it felt fine to talk about it. Publicly. On my ‘professional’ twitter account. The one I link to in my email signature that goes out to clients. And it didn’t feel wrong. As Erin had noted, emotional vulnerability has been experiencing a renaissance (Brenaissance?), and the realities of the pandemic pushed that further.
But… when the emotional vulnerability isn’t optional? Or temporary? When it revolves around things that are taboo, stigmatized, or uncomfortable? When we’re not in the first few months of the pandemic and “all in this together” anymore? When the momentarily-stalled machines of productivity-above-survivability growl back to life? When they never stopped for you? When it’s tied up in racial injustice, systemic violence, and other institutions of privilege that would very much like to carry on “as normal”? Whose vulnerability? When? About what? (I am emphatically not speaking only of myself and my experiences here. My whiteness and access to financial security have kept me alive and given me opportunities to be vulnerable with less risk and fear than others contend with and I know it.)
And am I disabled? I don’t know. Maybe. I could be more disabled, I know that. And the emotional pain I experience is as weird as the menstrual pain, in that I can switch from feeling like I’m going to die, or I’d like to die if it means not feeling that way anymore, from a 10 on the debilitating pain scale all the way back down to a 0 in an instant. Like it never happened. But it has, it does, and it will again. That I’ve learned. So I design my life around the (even less predictable) rhythms of it, and hope for the best. I anticipate. I learn from it. Is that disability? I don’t even know where all this stands relative to other people. Who can know when so much of the game is not talking about playing it.
I showed a draft of this post to Erin and her comment was, “It feels like you’re digging into what is disability and what is human in a deep way here. And the idea that we’ve separated disability from being in a way that makes parts of being human feel disabling.”
I have no idea if I’m disabled. I’m probably even less clear now then when I started this. But the point that has surfaced for me in all the messiness of this is if we’re going to be human in our work, that absolutely requires deep structural changes in how we work and the spaces we work in. Inside-change needs outside-change, and vice versa. Being whole and human is a lot. If I were to attempt to draw a ‘vent diagram’ for it, I would probably end up with a lot of overlapping circles, with, “Being whole and human is necessary for me to do the work I need to do well” on one, “Feeling like I’m able and allowed to be whole and human, including the messy and painful parts, is critical for my own mental wellness” on another, “Being truly whole and human carries its own emotional toll and potential for mental harm” on the third, then “Explicit displays of vulnerability or personal disclosures aren’t required for authentic wholeness and humanity”, and another with “The culture of silence and denial about struggles, especially stigmatized and taboo ones, as well as the limited framing afforded by an individualist view of the world limits our collective awareness of what wholeness and humanity entails”, and one last one that’s a bigger circle enveloping all of these, “The context of social injustice and inequity affects what makes up each of our wholenesses and also what we must navigate in our choices to show up in it”.
It’s a lot. It doesn’t resolve neatly. It doesn’t find a natural conclusion. The other writing advice Erin passed along to me was “resist arriving”. She’s kind of brilliant that way.
Extra Reading
Want more of Erin’s brilliance? You’re in luck! Her first book is coming out NEXT WEEK. The deliciously-titled, If You Really Love Me, Throw Me Off The Mountain, a memoir about risk, love, disability, romance, paragliding, and, oh yes, there’s French fries. Still time to pre-order!
Elizabeth Grim wrote a beautiful post about her experiences with her experiences with Type 1 Diabetes and how that’s informed her work as an evaluator.
There is so much more to be said about disability and its intersections and entanglements with racial justice and social transformation, and Mia Mingus and Leah Lakshmi Piepzna-Samarasinha are two brilliant people who have written and spoken about this extensively. Check them both out.