conversations about disability and loss

this is not about parents or caregivers. end of story. this space is not for you, about you, or to you. it is about disabled people.
[me talking with dani alexis]
me: [i wanna talk about how] disability rhetoric/activism needs to seriously reckon with loss as an experience that is often intertwined with disability?
like, loss as an experience, not loss as a transaction that further determines the cumulative value of a life.
dani: Meaning like loss of abilities, memories, opportunities etc? And maybe how we make space for grief without reading it as grief at loss of *value*
me: yes.
dani: Like, I’m sad I can’t eat chocolate anymore because migraines, but that should not be understood to mean I am less valuable than chocolate-eating people
Super mild loss but example
me: and also, like, i think it’s important to talk about loss because without a language for it, we end up lacking in any language to discuss so much of what structural ableism/oppression puts us through?
dani: OMG yes
This seems to me akin to Margaret Price’s thing about we need to be able to discuss pain
Like, as experience not transaction
And how do we get around the common response “yes, see, your loss is what makes disability sad! It’s why you need curing so nobody has to have the sads anymore!”? I do not know the answer but that seems like a meaningful question….
me: yes. also how like, experiences of loss in which the loss is profound enough to make us struggle to even conceive of how we might continue to live in any way other than the way of living we have lost. and how a big part of ableism and stuff is that like….some crises of grief/loss are thought of as experiences, while others are seen as obvious losses of value/possibility? so like, if you lose a loved one, it’s normal to think “how can i possibly live without them?” and nobody says “well, i guess there’s no way to live without them so you should just die…” whereas if you are paralyzed then even though your “how can i possibly live on without x/y/z functions!” is virtually identical to “how can i live without my loved one,” people assume that like, since obviously you have lost some value/use as a person by losing your ability to move your limbs, it makes sense for you to want to die.
dani: Oo, also sympathy for a disabled person’s loss/grief vs empathy. Because I think sympathy leads down the “fix with cure road” faster
…that makes a lot of sense. I was in mental hospital with a woman whose depression after her husband and son died was killing her, and people kept trying to talk her out of it. Whereas maybe if she’d lost her legs instead….
me: and the ability to like…detach modes of functioning from quantitative “levels”, so that we can see how like…my level of executive functioning is not a loss of value for me, but losing executive functioning you’d had to end up with my levels of executive functioning is a kind of loss that someone else might grieve for.
dani: I’m down to merely “good” memory instead of “fucking savant” and docs keep asking why that bothers me. Because this.
And neither is a value judgment but both are real exoeriences
me: and it’s super connected to like, the way in which we basically…iron out, and ignore the cruelties we inflict upon disabled people (especially those who need direct or consistent support services) and how like….the way we do that is by dismissing the grief and loss of disabled people whose ways of life are being irrevocably taken away, since to an able-bodied person, many kinds of disabled life are so completely lacking in the stuff-of-‘quality-of-life’ that the idea that those disabled people might suffer from having their wishes and ways of existing taken away makes almost no sense.
like, how can we talk about the pleasures of disability and atypicality without a language for loss–for the loss we experience when our pleasures are erased, removed, outlawed, and restricted simply because they are connected to our difference.
(yeah, this is a very queer piece, in my head)
dani: And without that language, how can we ever talk about disability as anything but a diminution of value?
me: and how can we talk about disability as anything other than the kind of “empty label” that neoliberalism tells us “identities” are?
like, as if my “identity” can only be an identity and not a flaw so long as i make sure that said identity is bereft of any real experiential substance, and is connected to neither pain nor pleasure.
because if there are things that i love and enjoy only because i am autistic, then i’m making autism out to be “superior” and if there are things i am hurt and oppressed by only because i am autistic, then i am making autism out to be “inferior.”
and the whole reason that i’m only allowed to move myself either up or down on some scale of “quality of life” is because our language for pain and pleasure is so limited, and shaped specifically into a single vector over and above any other.
dani: I literally never thought of it this way but YES THIS
me: so much so that like, we literally end up thinking that our pain is a form of pleasure, and our pleasure is a form of pain (see: how good it feels to punish yourself, or how scary it is to enjoy things)
dani: When you’re taught that your pleasure us painful to others (see: stunning) or your pain is the only route toward a “pleasurable” (in the NT sense) life (see: ABA), this is inevitable. And ABA and its ilk are inevitable when we can’t talk about gain/loss except in one very specific way
me: i think it’s also interesting to think about how like, the spatialization and commodification of interpersonal and social relationships seems to produce our understandings of like…what it means to experience pain and loss.
the same structures that teach us to personalize/individualize our difficulties are also saying “pain is what happens when someone breaks or takes away a thing from you. you help people in pain by putting them back to the way they were before they were broken, or giving them the things that someone took away from them,”
as if that’s actually how things work. as if like, people upset about colonialism are “just” upset about someone taking away their land so that they don’t have as much land anymore. as opposed to being upset that, along with the land they lived on, they have been robbed of a huge collection of diverse and interconnected ways of life, all of which were summarily eliminated as possibilities by colonizers.
and like, with kids and coping mechanisms: you do not need to “replace” bad coping mechanisms with good ones–you need to add to the pre-existing body of possible coping mechanisms a kid can access, and then understand that if you’ve done that, and the kid continues to employ the same coping mechanisms that they did before, they’re doing so for a reason?
dani: Is there a connection between the realization that a “loss” can’t be “made up” (with land, apologies, whatever) and its transition from an experience to a devaluing factor?
me: i don’t necessarily think it transitioned from being an experience to a devaluing factor…i think that our experiences of loss exceed those which are considered to reduce our value, and the situations in which our value is reduced are not necessarily ones that involve the experience of loss…so like, i don’t think there’s continuity between the two so much as a mutual process of restriction whereby loss ends up defining value (aka those who are less valued are less valued because they’ve lost/not gained something that others have), and value ends up defining loss (why are you upset about something that doesn’t reduce your value?/why aren’t you upset about having your value reduced?)
[this is me talking with neurodivergent k after she posted on her blog facebook page about her experience with losing her ability to do gymnastics, her main physical/social safe realm, after illness]
me: your thing that you wrote about the gymnastics things has re-gotten me on my thing about needing to write a piece about how we need to talk about loss and shit.
k: but we;re supposed to just cherish memories & not acknowledge loss 😛
me: yuuuup
because if you’ve lost things then obviously your life has less value.
because “loss” and “gain” are objective, quantitatively measured experiences that we can use to assess “how much” value someone’s life has.
ha. ha. haha. ha. hahaaaaa.
k: of course. everything is math
me: everything is math, and the most important thing is to calculate how much people are “worth”
k: because it just works like that
me: totally.
k: one of the reasons it took forever to write about the gymnastics thing is “well most people could never even do the shit you can still do”
me: UGH
which is just another way of saying “since you’re obviously someone whose life is happier than my pathetic sad child, then you are not allowed to have emotions.”
k: i also got, on my blog page. “well I’m old and disabled guess I should torch everything”. yes. because that is totally what I said.
me: like wtf.
k: a common theme on my blog shit is that in sporting and dancing places I’m not disabled, firstly
and third, i destroyed extremely painful things from ONE thing I’ve done. one. after lots of thought. I’m an adult i do what i want
me: like. EAUGH. i mean, part of the reason for me wanting to talk about the thing comes from like, my experiences with the whole trope in mental-illness spaces where like, having bad executive functioning for the first time is an example of how terrible being mentally ill is. and like…the way it’s discussed makes it clear that it’s the state of being someone with executive dysfunction that they’re repulsed by. which is VERY not cool. all that “ugh i’m so gross when i’m like this. this is why mental illness is terribleeeee” shit. but that doesn’t mean that anyone who has feels about a change in their ability to live their daily life is a shitty person for having those feelings!
k: all change sucks
me: like, not even “all change sucks” but like, THERE’S A DIFFERENCE BETWEEN BEING LIKE “i hate the way i am now because it makes me like THOSE people” and BEING LIKE “i’m really upset about this change because it means i can no longer live the live i used to live, and i loved that life!”
k: yes
me: i have a lot of feelings about “life ways” and like…struggling with having your way of living and your habits and stuff taken away from you.
k: With gymnastics I had my safe place ripped from me & tangible evidence that it was a thriving place can’t lead anywhere good
me: yep.
the idea that like, you’re just upset about like losing physical mobility or something is ridiculous (and also like ‘just physical mobility’ when that was/is such a source of pleasure and happiness for you). you lost an entire kind of life, a collection of resources and reliable connections and shit.
k: Yeah, it’s not just an adjusting to different disability thing. It’s more.
me: i know that i’ve had like REALLY INTENSE stress/trauma reactions to situations in which i assumed that by losing a certain status, or connection, i was losing all of my right to occupy a certain needed space, and all of my right to maintain connections with people i relied upon. like the “if i get kicked out of school, i’ll no longer be allowed to talk to my teachers any more.”
which seems like a “nbd” thing to other people, but to me, someone who doesn’t really talk to people (and NEVER. EVER. relied upon non-parent adults before i met certain professors), that was huge. it basically meant going back to having nobody around who i felt i could rely upon for anything.
so when you lose something like that, and you know that you’re someone that the world affords very little space to, and considers unnecessary and unincluded in the daily lives of most people, like…losing a connection to/right to exist in the one place that made you feel happy and safe is…everything, kinda.
it’s not everything forever, but it is everything in that moment.
k: Exactly that
me: yeah. i wanna write about that. because it feels to me like those are moments that lots of people have. but some people are more vulnerable to them than others, because they’re more marginalized. and some kinds of those moments (like losing a loved one) are considered like…things you will move past and eventually learn to live with, and other kinds of those moments (like losing your ability to do certain things physically, or not having people to look after you when you’re old, and so forth, are treated like “oh well, since you’ll never have another socially acceptable way of living, you might as well just kick the bucket!”
i can have conversations more often, and more easily, than i can write lengthy pieces. these are the kinds of conversations i have.
i want to talk about so many fucking things, y’all. this is my start. it is not everything i have to say. it’s not even 1/3 of what i have to say.
but it’s a start.
thanks to julia for chatting me up about this first–i would have included our conversation too if it weren’t for the fact that it was mostly us just allcaps-ing at each other, and if i thought it worth the time to bother you about getting your permission to include it here.

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