collapse
2019 Donation Drive

It's time for our annual Server Donation Drive! We need to raise at least $650 (same as last year) to keep The Cauldron's server online for another year. Please help! Either hit that Paypal button to the right and make a one-time donation in any amount or set up a monthly Bronze, Silver or Gold Donor subscription. You can find more info in this message!

Donations as of 13 Sept 2019: $656 donated. $6 more our minimum goal! Let's beat last year's total of $99 more than the minimum!


Note: This total is updated manually, usually once a day


* "Unable to verify referring url. Please go back and try again" Problem Logging In?

If you get an "Unable to verify referring url. Please go back and try again" error when you try to log in, you need to be sure you are accessing the board with a url that starts with "https://ecauldron.com".  If it starts with https://www.ecauldron.com" (or "http://www.ecauldron.com") you will get this error because "www.ecauldron.com" is not technically the same website as "ecauldron.com". Moving to the more secure "https" means it is more picky about such things.

Author Topic: Workshop crowdsourcing: Being Pagan with a chronic illness  (Read 3897 times)

Jenett

  • Moderator
  • *****
  • Join Date: Jun 2011
  • Location: Boston, MA
  • Posts: 3077
  • Country: us
  • Total likes: 635
    • View Profile
    • Seeking: First steps on a path
  • Religion: Initiatory religious witchcraft
  • Preferred Pronouns: she/her
Workshop crowdsourcing: Being Pagan with a chronic illness
« on: July 05, 2013, 04:22:11 pm »
So, I volunteered to do a workshop at the Southern Maine Pagan Pride day, and threw out a bunch of topics, and one of the ones they leapt on was about being Pagan and living with chronic illness.

But because my experience of same is typical in some ways and very atypical in others, I definitely want to crowdsource my planning. What would you be interested in hearing in this kind of workshop? (I suspect the majority of the people there will be solitary practitioners, and one of the larger issues in the state is that it can be a long way to go do anything not in your immediate area.)

I don't expect to quote anyone directly: it is possible I may end up saying "As I was planning this, someone mentioned X" in passing. (If that's a problem, please let me know so I can avoid it.) I default to not talking about stuff in individual conversation unless I know that someone has discussed that bit openly on the public 'net in the past.

Things I'm already planning to talk about (but would love more comment about)
- Energy work and how both illness and medication can affect how it feels for us, what's easy or hard for us, etc.

- Small daily or occasional practices that we can set up when we feel better, but remind us when we feel worse (I plan to definitely talk about painting my toenails, playlists, and wearing specific jewelry, but I'd love lots of other examples.)

- Ways to stay connected with other Pagans that do not require substantial exertion or driving (my current issue, in part.)

- Dealing with some aspects of group interaction/practice (I don't intend to go hugely into this one, but more a "Here's stuff to bring up early" and "here's ways to frame it" and "here's ways to deal with stuff like food restrictions in ritual in a way that's likely to not cause too much fuss")

(Probably with a brief sidebar on "small groups are not going to automatically do every accessible thing ever all the time: some of them just cost too much money and time if no one actually needs them. However, if you do need them, here's stuff that might be readily possible, and things that event planners/etc. can consider doing/you can consider asking for.)

- A more philosophical bit about living to the edges of your space, even if you have changing edges to your space, and about not artificially restricting yourself, at the same time you need to moderate so you don't do stupid things to your body you didn't mean to.
Seek Knowledge, Find Wisdom: Research help on esoteric and eclectic topics (consulting and other services)

Seeking: first steps on a Pagan path (advice for seekers and people new to Paganism)

HeartShadow

  • Adept Member
  • ********
  • Join Date: Jun 2011
  • Posts: 2195
  • Total likes: 3
    • View Profile
    • http://www.flamekeeping.org
Workshop crowdsourcing: Being Pagan with a chronic illness
« Reply #1 on: July 12, 2013, 02:27:11 pm »
Quote from: Jenett;114702
So, I volunteered to do a workshop at the Southern Maine Pagan Pride day, and threw out a bunch of topics, and one of the ones they leapt on was about being Pagan and living with chronic illness.

But because my experience of same is typical in some ways and very atypical in others, I definitely want to crowdsource my planning. What would you be interested in hearing in this kind of workshop? (I suspect the majority of the people there will be solitary practitioners, and one of the larger issues in the state is that it can be a long way to go do anything not in your immediate area.)

I don't expect to quote anyone directly: it is possible I may end up saying "As I was planning this, someone mentioned X" in passing. (If that's a problem, please let me know so I can avoid it.) I default to not talking about stuff in individual conversation unless I know that someone has discussed that bit openly on the public 'net in the past.

Things I'm already planning to talk about (but would love more comment about)
- Energy work and how both illness and medication can affect how it feels for us, what's easy or hard for us, etc.

- Small daily or occasional practices that we can set up when we feel better, but remind us when we feel worse (I plan to definitely talk about painting my toenails, playlists, and wearing specific jewelry, but I'd love lots of other examples.)

- Ways to stay connected with other Pagans that do not require substantial exertion or driving (my current issue, in part.)

- Dealing with some aspects of group interaction/practice (I don't intend to go hugely into this one, but more a "Here's stuff to bring up early" and "here's ways to frame it" and "here's ways to deal with stuff like food restrictions in ritual in a way that's likely to not cause too much fuss")

(Probably with a brief sidebar on "small groups are not going to automatically do every accessible thing ever all the time: some of them just cost too much money and time if no one actually needs them. However, if you do need them, here's stuff that might be readily possible, and things that event planners/etc. can consider doing/you can consider asking for.)

- A more philosophical bit about living to the edges of your space, even if you have changing edges to your space, and about not artificially restricting yourself, at the same time you need to moderate so you don't do stupid things to your body you didn't mean to.

I would definitely include something about mental illnesses.  Normalizing them and living with them and how depression or whatever doesn't bad pagan you.

Kylara

  • Sr. Master Member
  • *******
  • Join Date: Feb 2012
  • Posts: 888
  • Country: us
  • Total likes: 64
    • View Profile
    • https://www.patreon.com/kyndryana
  • Religion: Norse Fusion Witchcraft
  • Preferred Pronouns: she/her/hers
Re: Workshop crowdsourcing: Being Pagan with a chronic illness
« Reply #2 on: July 13, 2013, 12:37:08 pm »
Quote from: Jenett;114702
So, I volunteered to do a workshop at the Southern Maine Pagan Pride day, and threw out a bunch of topics, and one of the ones they leapt on was about being Pagan and living with chronic illness.

But because my experience of same is typical in some ways and very atypical in others, I definitely want to crowdsource my planning. What would you be interested in hearing in this kind of workshop? (I suspect the majority of the people there will be solitary practitioners, and one of the larger issues in the state is that it can be a long way to go do anything not in your immediate area.)

 
How about ways to start conversations about special needs with an event coordinator?  I am sure that some people feel very uncomfortable bringing up an issue they might have (or things that will need to be taken into consideration) and tips on how to bring it up or talk about it with those in charge might be very helpful.

Also, what about discussing whether those special needs should be announced to the group or kept private?  And in both cases tips on how to do it?  Some needs might be easy to just take care of if a plan is worked out ahead of time between the people in charge and the person with special needs and might not need to be mentioned at all, but others might be obvious and a small announcement might help avoid questions in the middle of stuff (which might be more embarrassing)
Check out my Patreon for more writing and other goodies!

Naomi J

  • Grand Master Member
  • *******
  • Join Date: Aug 2012
  • Location: London, UK
  • Posts: 1967
  • Country: gb
  • Total likes: 2
    • View Profile
    • http://leithincluan.wordpress.com/
  • Religion: Gaelic polytheism, modern druidry, rather attached to Cailleach Bhearra, Narnian heretic...
  • Preferred Pronouns: They or she
Re: Workshop crowdsourcing: Being Pagan with a chronic illness
« Reply #3 on: July 13, 2013, 01:24:01 pm »
Quote from: Jenett;114702
So, I volunteered to do a workshop at the Southern Maine Pagan Pride day, and threw out a bunch of topics, and one of the ones they leapt on was about being Pagan and living with chronic illness.

But because my experience of same is typical in some ways and very atypical in others, I definitely want to crowdsource my planning. What would you be interested in hearing in this kind of workshop? (I suspect the majority of the people there will be solitary practitioners, and one of the larger issues in the state is that it can be a long way to go do anything not in your immediate area.)

It sounds like your approach is going to be different from what mine would be in the same talk (which is good - diversity and all that!), but which makes it a bit difficult for me to comment. I tend to think of disability* and impairment as two separate things - of course overlapping a lot in practice, but needing different approaches. As a result, I have somewhat sidelined the personal, health-related stuff that is not specifically about social justice. So, you may prefer to take my ideas with a grain of salt, as I probably really need to attend your talk. But here are a couple of my thoughts.

One thing I have found in the Pagan world is that, maybe because of the healing focus, lots of people with long-term conditions are very apologetic about it. In contrast, I come from a civil rights-focused campaigning background. So, yes, I do believe that there's a LOT more that most groups can be doing to include people with chronic illness and disability, without it having to cost anything at all. I've regularly had the disheartening conversations that go something like the following:

Me: Hi, I used to come to your moot, but now you meet upstairs/late at night/[insert other barrier here]. I was wondering if you would consider changing back to your previous venue/time slot/[whatever].

Them: Oh, yes, we did meet downstairs/at 7pm in the past, but attendance wasn't so good back then, and also no disabled people even came along!

Me: Did you advertise that you had good access? Did you reach out to local disabled people? Did you think that some of the attendees might have had invisible impairments? And you clearly missed me - I was there.

Them: Oh, no, we did nothing like that. And we're not going to consider moving venues/times/etc. But hey, there's a picnic in August that we hold once a year! You can come to that! So you're not even left out really.

On the one hand, I always want to challenge attitudes like this, and many others, that serve to further disable people who are already experiencing chronic illness. On the other hand, I'm disabled and don't have many spoons. So the ever-decreasing circles just keep on getting smaller. I think that in any talk about chronic illness and the Pagan community, it's really important to address some of these negative attitudes, because I personally believe it's never going to get better unless we stop making excuses for the community. But that's my perspective - I understand that not everyone takes that approach.

Related to that, there's the way that people are often made to feel about their conditions. Shad mentioned this above - we're often seen as bad Pagans if we struggle with physical, mental or neurodiversity conditions. (This is nothing new to me, by the way. I was always seen as a 'failing Christian' for 'not having enough faith' and not being healed.) I'm always getting unhelpful advice from Pagans, being told everything from what to eat, to what treatments to get, to what is spiritually 'wrong' with me (hint: only the usual stuff). This makes it quite intimidating to go to Pagan moots, festivals - basically anywhere that isn't my own grove or study group, where they know me. This is also an attitude-based thing. I don't know what would be needed to change it, because I think that Pagan idea towards 'health' is fairly entrenched. But it's always worth bringing up at these kinds of things, because often I think people think they're helping, when they're actually harming.

I'll see if I can come up with anything else. Hope it goes really well, by the way! Very glad to see this topic being talked about in a mainstream Pagan forum.

*I take a British 'social model of disability' approach here, which says that disability is social oppression imposed on top of impairments (chronic conditions or injuries).
« Last Edit: July 13, 2013, 01:25:47 pm by Naomi J »
"We're all stories, in the end. Make it a good one, eh?"
- Doctor Who

Stone Onto Sand

Jenett

  • Moderator
  • *****
  • Join Date: Jun 2011
  • Location: Boston, MA
  • Posts: 3077
  • Country: us
  • Total likes: 635
    • View Profile
    • Seeking: First steps on a path
  • Religion: Initiatory religious witchcraft
  • Preferred Pronouns: she/her
Re: Workshop crowdsourcing: Being Pagan with a chronic illness
« Reply #4 on: July 13, 2013, 03:09:09 pm »
Quote from: Naomi J;115500
It sounds like your approach is going to be different from what mine would be in the same talk (which is good - diversity and all that!), but which makes it a bit difficult for me to comment. I tend to think of disability* and impairment as two separate things - of course overlapping a lot in practice, but needing different approaches. As a result, I have somewhat sidelined the personal, health-related stuff that is not specifically about social justice. So, you may prefer to take my ideas with a grain of salt, as I probably really need to attend your talk. But here are a couple of my thoughts.


For a variety of reasons, I want this one to focus on the personal experience - the problems of maintaining a personal spiritual practice with widely varying amounts of energy/focus/etc, for example. Or adaptations for personal practice that do not necessarily take daily planning/focus but can be small reminders (see my devotional practice of painting my toenails, my use of playlists, the idea of a shrine that does not require daily attention.)

This is both because of the venue - Pagan Pride, which gets people at a wide variety of experience levels and familiarity with Paganism as a whole - and because of specific geographical issues. (There simply *aren't* that many Pagan group events in Maine. And transportation is a whole other issue.)

So I am - for extremely solid demographic reasons - assuming that most of my audience are solitary practitioners, who intend to *continue* being solitary practitioners, and for whom participation in larger events (like Pagan Pride or Beltane on the Beach) is an occasional thing (and those two events are both reasonably good about access/etc. within their practical limits.)

That said, I'm also considering proposing a similar topic for Paganicon, where a larger focus on group events is a lot more useful and appropriate (and also where I would have more time: this workshop is 45 minutes: Paganicon, I'd probably propose for a 90 minute slot.)

All of that said, I think there's some excellent stuff in here about attitude and approach, and about how to deal with people with the Stupid Helpful Advice. Noting again that I want to keep the focus - for this talk - on the internal experience more than the social experience, for a variety of reasons.

(The "How do I build a practice when I have some days where I'm okay, but have a dozen other things that I really ought to do while I can maybe manage it, and some days where even reading for 5 minutes is too much concentration", for example.)

Also, yes, excellent stuff re: mental health, though I'm also contemplating how to frame that. There will be a handout of some kind, and I'll also be sticking it up online when we get a bit closer.
Seek Knowledge, Find Wisdom: Research help on esoteric and eclectic topics (consulting and other services)

Seeking: first steps on a Pagan path (advice for seekers and people new to Paganism)

Naomi J

  • Grand Master Member
  • *******
  • Join Date: Aug 2012
  • Location: London, UK
  • Posts: 1967
  • Country: gb
  • Total likes: 2
    • View Profile
    • http://leithincluan.wordpress.com/
  • Religion: Gaelic polytheism, modern druidry, rather attached to Cailleach Bhearra, Narnian heretic...
  • Preferred Pronouns: They or she
Re: Workshop crowdsourcing: Being Pagan with a chronic illness
« Reply #5 on: July 13, 2013, 04:50:24 pm »
Quote from: Jenett;115511
For a variety of reasons, I want this one to focus on the personal experience - the problems of maintaining a personal spiritual practice with widely varying amounts of energy/focus/etc, for example. Or adaptations for personal practice that do not necessarily take daily planning/focus but can be small reminders (see my devotional practice of painting my toenails, my use of playlists, the idea of a shrine that does not require daily attention.)

This is both because of the venue - Pagan Pride, which gets people at a wide variety of experience levels and familiarity with Paganism as a whole - and because of specific geographical issues. (There simply *aren't* that many Pagan group events in Maine. And transportation is a whole other issue.)

So I am - for extremely solid demographic reasons - assuming that most of my audience are solitary practitioners, who intend to *continue* being solitary practitioners, and for whom participation in larger events (like Pagan Pride or Beltane on the Beach) is an occasional thing (and those two events are both reasonably good about access/etc. within their practical limits.)


Sure - I understand. To be honest, I wasn't sure whether you'd find my comments helpful, but I thought I should still share them anyway, as you never know when something can be useful in a different context from its original one.

I'd love to hear more about the other talk you're proposing, too.
"We're all stories, in the end. Make it a good one, eh?"
- Doctor Who

Stone Onto Sand

MadZealot

  • Adept Member
  • ********
  • Join Date: Nov 2011
  • Location: So Cal
  • Posts: 2446
  • Country: us
  • Total likes: 147
  • Eye yam tu papi.
    • View Profile
  • Religion: Bitter Clinger. Sith Lord.
Re: Workshop crowdsourcing: Being Pagan with a chronic illness
« Reply #6 on: July 15, 2013, 09:49:39 pm »
Quote from: Jenett;115511
For a variety of reasons, I want this one to focus on the personal experience - the problems of maintaining a personal spiritual practice with widely varying amounts of energy/focus/etc, for example.

Well here's what I can add--

As an asthmatic, concerns 'bout doing ritual are mainly practical ones.  I take lung meds and an allergy pill about an hour prior.  I don't move much doing ritual, but I do like being able to breathe deeply while I relax and get-one-with.  The only other main concern is incense-- how much I'm gonna burn.  I can do a single stick or cone indoors, but anything more and I need to be outside.  [It also keeps the smoke alarm happy and quiet.]  And much as I'd like to do the Batman Begins thing and breathe in the smoke of the mysterious blue flower, I just can't.  File that under "knowing your limits" I guess.  

Dealing with depression is a different beast.  When I'm real low I don't do anything, so part of my therapy is setting myself small goals, something as simple as stepping the fuck outside, if need be, and reporting on whether I succeeded the next session.  Getting that one small thing done is a victory, and helps remind you that you are not your illness.  

But then I get real guilty if I don't do ritual-- still kicking myself over not marking the summer solstice, for instance.  I didn't even acknowledge it.  And, what's worse, I kick myself harder over doing a half-assed ritual.  As if I don't do ALL TEH STEPZ the work is not complete or meaningful in any way-- and of course if I half-ass it I'm some sort of fuckup.  So that's when I try to put my therapy-coping trick to good use.  So even if I light one candle.  One incense cone.  Sit still one minute.  It's a win.  

So the trick is to not let the practice lag when I'm feeling down.  To at least do a little sumpin and not kick myself in the nuts if it's not all formal and proper.  Let even the smallest accomplishment be a victory and reward.  Lately I've been succeeding more than not but I'm still working on not being a self-hating failure for skipping something important.  

Since having a major meltdown not too long ago I've also noticed that my visualisation and energy work abilities are down to nil.  Part of that I'm sure is due to my not practicing for months in the aftermath, but I'm sure part of it is due to the depression itself.  I perceive it as a defeatist adversary living in my head, and if I can't kick it the fuck out, I can at least kick it the fuck down.  Hello again, beginner visualisation and energy work exercises.  I'll get 'em back.

Dunno if that helps your talk at all, but it's what I got.
« Last Edit: July 15, 2013, 09:53:10 pm by MadZealot »
Superman is uncircumcised. Change my mind.

Jenett

  • Moderator
  • *****
  • Join Date: Jun 2011
  • Location: Boston, MA
  • Posts: 3077
  • Country: us
  • Total likes: 635
    • View Profile
    • Seeking: First steps on a path
  • Religion: Initiatory religious witchcraft
  • Preferred Pronouns: she/her
Re: Workshop crowdsourcing: Being Pagan with a chronic illness
« Reply #7 on: August 09, 2013, 04:37:59 pm »
Quote from: Jenett;114702
So, I volunteered to do a workshop at the Southern Maine Pagan Pride day, and threw out a bunch of topics, and one of the ones they leapt on was about being Pagan and living with chronic illness.

 
I thought you all might like to see what I came up with: this is my handout + what I'd say about that that isn't explicit in the handout.
http://gleewood.org/seeking/practices/chronic-illness

There's other topics I think it's likely we'll get into (how to talk to groups and events, the larger topic of dealing with society, etc) but they didn't fit in the handout piece as clearly, and I also want to leave it open for who shows up, and what they're interested in.
Seek Knowledge, Find Wisdom: Research help on esoteric and eclectic topics (consulting and other services)

Seeking: first steps on a Pagan path (advice for seekers and people new to Paganism)

Tags:
 

Related Topics

  Subject / Started by Replies Last post
66 Replies
11130 Views
Last post November 03, 2012, 02:10:29 am
by Aine Rayne
13 Replies
4953 Views
Last post February 09, 2013, 10:36:10 am
by Naomi J
4 Replies
767 Views
Last post January 17, 2014, 02:56:28 am
by Naomi J
31 Replies
4716 Views
Last post March 12, 2017, 08:50:58 pm
by Alexeigynaix
14 Replies
1500 Views
Last post April 17, 2017, 06:52:52 am
by PerditaPickle

Special Interest Group

Warning: You are currently in a Special Interest Group on the message board with special rules and focused discussions.

* Who's Online

  • Dot Guests: 30
  • Dot Hidden: 0
  • Dot Users: 4
  • Dot Users Online:

* Please Donate!

The Cauldron's server is expensive and requires monthly payments. Please become a Bronze, Silver or Gold Donor if you can. Donations are needed every month. Without member support, we can't afford the server.

* In Memoriam

Chavi (2006)
Elspeth (2010)
Marilyn (2013)

* Cauldron Staff

Co-Hosts:
LyricFox & Randall

Senior Staff:
Darkhawk

Message Board Staff
Board Coordinator:
Sunflower

Assistant Board Coordinator:
Aster Breo

Board Staff:
Allaya, Chatelaine, HarpingHawke, Jenett, Morag, rocquelaire, Sefiru

Discord Chat Staff
Chat Coordinator:
Morag

Reserve Staff:
Aisling

Cauldron Council:
Bob, Catja, Emma-Eldritch, Fausta, Jubes, Kelly, Phouka, Sperran, Star, Steve, Tana

Cauldron Assistants
[Non-Staff Positions]

Site Assistants
[Non-Staff Positions]
Webmaster:
Randall