I started to experience progressive illness and embarked on a diagnostic odyssey. The biggest concern was coping mechanisms in how to physically live. With dumb luck and desperation, a genetic screening gave me a diagnosis and treatment options. At this point, as coping mechanisms and therapies failed and reality of my future set in, a huge challenge was to confront my grief. Grief is never a simple journey.
Wallowing is not an option. It’s avoidance of what we truly fear.
Special attention is needed for caretakers. It’s crucial that enabling is not occurring, or worse, codependency. And caregiver burnout is a real concern.
Best wishes on your journey. I hope you continue to find joy in your life.
Another great post, Kier. Again mirrors my experience with depression. When in a pit, now about 18 years ago, I got a warning from a GP friend that it was swallowing up my life. This was partly because I’d allowed it to become part of my “identity.” Although I still suffer from depression, especially when overstressed, a big part of my long term recovery came from rejecting that identity. I’m sorry to say that I think diagnostic labelling can encourage this sort of identifying with one’s illness. But things like ‘core process’ psychotherapy helped. This takes a cue from Buddhism. In core process, you are seen as basically okay and capable of healing. The idea is to remove those obstacles to healing. I think it also helps to see many aspects of ‘identity’ as impermanent and fluid.
I really relate to your story regarding depression, something I dealt with in my late teens and early twenties. At a certain point I'd convinced myself that the low moods and existential dread were core parts of myself, and were even crucial to my creative practice! Boy did I have that backwards. Yes, identity is much more fluid than we think!
This is also very true of the online autism/ neurodivergent community, this idea that you’re completely powerless to ableism and you can’t take steps to improve your life and form connections with people
Sep 1, 2023·edited Sep 1, 2023Liked by Kier Adrian Gray
The community has evolved dramatically over time, and not in a direction I like.
I've had what's now called ME/CFS to one degree or another since the mid-nineties, which makes me a classic spoonie, a label I liked briefly twenty years ago when it meant something a bit different than it does now. A year or so into the experience, I fell into an online disability circle when I met a bunch of folks at an old-fashioned general-purpose BBS (anachronistic even then!) that happened to include a lot of tough-minded people with physical disabilities. It was a lucky break for me. These people recognized me as having a classic, normal set of feelings and priorities for someone relatively new to disability, and I got kind of taken under the wing of a couple of them, particularly a woman who was blind from birth and had a degree from Princeton.
They set a good example and had some very good advice, chief among which was: Be damned careful how much you wind up owing to your disability or illness. That's true for everybody, not just people who might get better.
The Gen-X disability culture I came up in was grouchy, not whiny, and it was relentlessly reasonable. The unspoken vibe was that people with physical disabilities deserved to be treated with the respect due to rational, epistemically adequate creatures, and that those of us who are adults are indeed actual adults and deserve to be treated as such.
I wish more people had access to the experience I did, but disability culture, especially online disability culture, has changed a lot since then.
What a different online experience! It's really interesting to think about it changing over time, especially considering how much safetyism has permeated the culture (a comment over on Instagram talked about how spoonie culture seems to infantilize people). I like what you said about your fellow BBS-ers recognizing a normal set of feelings for someone new to disability. What concerns me about spoonie culture is the potential for people to get stuck in those feelings permanently, rather than figuring out how to make peace with them and moving on. Thanks for your comment!
I'm not actually sure that the feelings and priorities I'm thinking of were the ones you're thinking of! At the top of my agenda was a pretty practical set of concerns.
It was 100% an anti-infantilization culture. If I'd gone mooning over my sorry state and All That I Had Lost, dramatically flinging the back of my hand across my pale and sickly brow, I would have been tolerated briefly and then politely told to knock it off and straighten up. Which is not to say it was a positivity pit: funny stories about able-bodied people being jackasses were always welcome.
That change involves a lot of cultural trends, obviously. The ones that come to my mind are: changes in power and status within overlapping/adjacent disability circles; a general societal trend towards infantilization and emotional swaddling; and the changing idea of what "identity" even means. Whatever one might think about the mind/body connection or the "realness" of mental illnesses — and my own position is, "it's complicated" — that old stiff upper lip culture was never going to survive the rise of mental health awareness and the constant drumbeat that depression, especially, is "just like cancer" and a disability just like any other. We got into this odd position in which a traditional basis for anti-ableism (among physically disabled people, anyway) was thoroughly undermined in the name of anti-ableism. The online disability culture of the mentally ill, as least as I saw it from the outside, pretty much engulfed disability culture as a whole. As for "identity", that seems a lot harder to distinguish from "fandom" than it used to be.
Sep 2, 2023·edited Sep 2, 2023Liked by Kier Adrian Gray
For anybody curious about what disability culture was like in the 90s, there's a 1993 book titled "No Pity: People with Disabilities Forging a New Civil Rights Movement" that's worth taking a look at.
It's not perfect. The book's a polemic, for sure, trying to both describe and foster class consciousness of disabled people; I think it overstates the degree to which people with developmental disabilities were integrated into the mainstream of disability politics. But you can get a sense of the mood from the title alone.
I started to experience progressive illness and embarked on a diagnostic odyssey. The biggest concern was coping mechanisms in how to physically live. With dumb luck and desperation, a genetic screening gave me a diagnosis and treatment options. At this point, as coping mechanisms and therapies failed and reality of my future set in, a huge challenge was to confront my grief. Grief is never a simple journey.
Wallowing is not an option. It’s avoidance of what we truly fear.
Special attention is needed for caretakers. It’s crucial that enabling is not occurring, or worse, codependency. And caregiver burnout is a real concern.
Best wishes on your journey. I hope you continue to find joy in your life.
Thank you—best wishes to you as well.
Access to recovery (and its barriers) is a massive topic. We are exploring and tending this always !
My colleague Max Morris (Intuitive Public Radio) wrote this in response to your peace: https://substack.com/@intuitivepublicradio/note/c-39484724?r=ql51y&utm_medium=ios&utm_source=notes-share-action
We invite folks to check it out and respond 💕
Your post inspired us to speak on further important related intersections, we thank you for your work!
Another great post, Kier. Again mirrors my experience with depression. When in a pit, now about 18 years ago, I got a warning from a GP friend that it was swallowing up my life. This was partly because I’d allowed it to become part of my “identity.” Although I still suffer from depression, especially when overstressed, a big part of my long term recovery came from rejecting that identity. I’m sorry to say that I think diagnostic labelling can encourage this sort of identifying with one’s illness. But things like ‘core process’ psychotherapy helped. This takes a cue from Buddhism. In core process, you are seen as basically okay and capable of healing. The idea is to remove those obstacles to healing. I think it also helps to see many aspects of ‘identity’ as impermanent and fluid.
I really relate to your story regarding depression, something I dealt with in my late teens and early twenties. At a certain point I'd convinced myself that the low moods and existential dread were core parts of myself, and were even crucial to my creative practice! Boy did I have that backwards. Yes, identity is much more fluid than we think!
This is also very true of the online autism/ neurodivergent community, this idea that you’re completely powerless to ableism and you can’t take steps to improve your life and form connections with people
That sounds so discouraging. Acknowledging and receiving compassion for difficulties is great. Letting them run your life? Not so much.
This is an excellent article, and crucial. Thank you for writing this.
Thank you for the kind words!
The community has evolved dramatically over time, and not in a direction I like.
I've had what's now called ME/CFS to one degree or another since the mid-nineties, which makes me a classic spoonie, a label I liked briefly twenty years ago when it meant something a bit different than it does now. A year or so into the experience, I fell into an online disability circle when I met a bunch of folks at an old-fashioned general-purpose BBS (anachronistic even then!) that happened to include a lot of tough-minded people with physical disabilities. It was a lucky break for me. These people recognized me as having a classic, normal set of feelings and priorities for someone relatively new to disability, and I got kind of taken under the wing of a couple of them, particularly a woman who was blind from birth and had a degree from Princeton.
They set a good example and had some very good advice, chief among which was: Be damned careful how much you wind up owing to your disability or illness. That's true for everybody, not just people who might get better.
The Gen-X disability culture I came up in was grouchy, not whiny, and it was relentlessly reasonable. The unspoken vibe was that people with physical disabilities deserved to be treated with the respect due to rational, epistemically adequate creatures, and that those of us who are adults are indeed actual adults and deserve to be treated as such.
I wish more people had access to the experience I did, but disability culture, especially online disability culture, has changed a lot since then.
What a different online experience! It's really interesting to think about it changing over time, especially considering how much safetyism has permeated the culture (a comment over on Instagram talked about how spoonie culture seems to infantilize people). I like what you said about your fellow BBS-ers recognizing a normal set of feelings for someone new to disability. What concerns me about spoonie culture is the potential for people to get stuck in those feelings permanently, rather than figuring out how to make peace with them and moving on. Thanks for your comment!
I'm not actually sure that the feelings and priorities I'm thinking of were the ones you're thinking of! At the top of my agenda was a pretty practical set of concerns.
It was 100% an anti-infantilization culture. If I'd gone mooning over my sorry state and All That I Had Lost, dramatically flinging the back of my hand across my pale and sickly brow, I would have been tolerated briefly and then politely told to knock it off and straighten up. Which is not to say it was a positivity pit: funny stories about able-bodied people being jackasses were always welcome.
That change involves a lot of cultural trends, obviously. The ones that come to my mind are: changes in power and status within overlapping/adjacent disability circles; a general societal trend towards infantilization and emotional swaddling; and the changing idea of what "identity" even means. Whatever one might think about the mind/body connection or the "realness" of mental illnesses — and my own position is, "it's complicated" — that old stiff upper lip culture was never going to survive the rise of mental health awareness and the constant drumbeat that depression, especially, is "just like cancer" and a disability just like any other. We got into this odd position in which a traditional basis for anti-ableism (among physically disabled people, anyway) was thoroughly undermined in the name of anti-ableism. The online disability culture of the mentally ill, as least as I saw it from the outside, pretty much engulfed disability culture as a whole. As for "identity", that seems a lot harder to distinguish from "fandom" than it used to be.
No doubt it'll all change again. I wonder how.
For anybody curious about what disability culture was like in the 90s, there's a 1993 book titled "No Pity: People with Disabilities Forging a New Civil Rights Movement" that's worth taking a look at.
It's not perfect. The book's a polemic, for sure, trying to both describe and foster class consciousness of disabled people; I think it overstates the degree to which people with developmental disabilities were integrated into the mainstream of disability politics. But you can get a sense of the mood from the title alone.
https://archive.org/details/nopitypeoplewith0000unse/page/n3/mode/2up
Amazing—thanks for sharing this!
Astute observations!
Thanks, Kier, and thanks for letting me ramble on here!
Let me know if you ever write more on this topic because I’d love to read it.