The current political landscape is having a devastating impact on the health of those within the disability community. A look at how we can save spoons and leverage our unique powers to resist.
I, for one, am so grateful you hit “publish” in the middle of the night. This is when I am usually up and reading! Your work is so important. I am forwarding to a friend who is really struggling right now and I know your handy bulleted list will really help them. Thank you so much for your generosity of self and spirit.
Thank you so much for saying Michael! You have no idea what it means to me to know my words brought you comfort and you didn’t mind getting them in the middle of the night … really being hard on myself for publishing accidentally.
I hope it helps your friend as well. It’s so difficult to exist online right now but for many of us it’s our only real option for connection and companionship. A terribly difficult trade off with all the toxicity and my goal is to help people find ways to make their little corner of the internet a bit more manageable. And to recognize their power … because even those of us who are completely bedbound can still bring about change in our own unique ways!
I honestly feel like I’m running on empty but I find it impossible (and irresponsible) to look away. And it’s not just Trump and American politics! We Canadians are dealing with the Liberal Leadership race, Ford possibly winning another 4 years to continue ransacking Ontario, Alberta’s fictitious COVID report and pretty much anything Danielle Smith or Pierre Poilievre’s mouth.
Thank you for reminding me to take a breath and save a few spoons so I can fight again tomorrow.
Fellow Ontarian here and I agree with everything you’ve said! It’s just so much right now and that’s why I’m trying hard to take more breaks and focus on what I CAN control. Which admittedly isn’t much… but I can write and try and help others get through these challenging times.
High spoon deficit here. I forgot this fitting analogy. Safety online for disabled is up my alley.
I’ve been using instagram to decompress finding my favorite musicians David Bowie at the top to enjoy and the people are kind to my unique way I interact.
But exercise helped me this morning to manage my health better.
I lost my dog October last year and stopped walking so today forced myself. It gave me a spoonful of energy to read your post.
So sorry to hear about your high spoon deficit but I’m glad you’ve found ways to still have fun and decompress online!
I can’t get out for walks anymore and I really miss it because it’s a fantastic way to regain a few spoons. I hope you’re able to keep doing it and I’m sorry for the loss of your pup.
Glad you hit publish. It reads clearly just as it is written and doesn’t need any more spoons 💕 I would like to share with an advocacy group I just joined. Me and my best friend were the only ones who masked in the last meeting and there were about sixty people in an enclosed church community space. They were talking about how to reach threatened communities, and the disabled community was not brought up. I would be more comfortable meeting remotely - I mean I love being with people as it is such a rare thing for me - but I definitely feel more comfortable having control of who I share my space with.
I hope it helps! It’s so frustrating when activism and community care organizations aren’t masking. We need to keep people as healthy as possible for the fight ahead.
I’m also working on an article about masking… I figure a lot of people stopped years ago and might be interested in starting again with the public health mess in the US. we’ve learned so much about the best kinds of masks and how to make them fit better etc… So I’m going to put everything in a handy mask guide!
I would love to give up Meta but my boys’ school post pictures of their activities that I cannot see in person. I love the candid photos they take in the classrooms too. I limit my scrolling & try not to beat myself up for not giving it up in protest.
I’ve seen some great suggestions for people who want to give it up but can’t for reasons like you described.
I know a lot of people are also in local support groups specific to their disease or chronic illness, and they contain invaluable information which is hard to find elsewhere.
The tips I’ve seen are to only use it for the necessary groups and nothing else. Don’t click on ANY ads or buy any products through it. Don’t click on links or anything which could generate revenue.
It’s a good start and a way to make sure you’re not supporting it any more than absolutely necessary!
Thank you Krista! I felt so guilty sending something to people’s inboxes at midnight … but thankfully folks don’t seem too mad. I think my poor heart bore the brunt of it because it definitely had a few minutes of panic when it realized what I had done 🤦♀️
I have my electronics on sleep mode at night, as I suspect most do. So don’t worry about notifications going off! Whenever you publish is the right time.
That was my hope! My phone is on airplane whenever I’m trying to sleep because I can’t handle any distractions at all… so hopefully it didn’t wake anyone up!
Thanks Rudi, that’s so kind of you to say! No need to be sorry, I’m glad to have you here now 😊. You can also find me on Bluesky and Mastodon under the same handle. I’ve been spending less and less time on twitter because it’s so toxic, but don’t want to completely close up while there’s still members of the community who haven’t been able to make the switch elsewhere.
Thank you Jane, I appreciate you reading! I feel like everyone across the world is feeling the reverberations… so we probably all need to be extra mindful of spoons.
I thought it seemed odd for you to be posting so late - then I saw your note. Looks good to me though and you give some really sound advice. I too am finding the news lately surreal and depressing, and never thought in my lifetime would I hear an elected official threaten to annex Canada, among other countries. Definitely important to take frequent breaks from the craziness that the news cycle has become...
Definitely odd and I’m kicking myself for my mistake, I’m just hoping folks understand these things happen and find the humour in the situation.
My spoons were so low that I made a mistake and then struggled to take my own advice about unplugging.
That sums up the chronic illness experience. We can do everything “right” and still have something unexpected throw our bodies into chaos… so we don’t need the news of the world adding to that chaos.
I, for one, am so grateful you hit “publish” in the middle of the night. This is when I am usually up and reading! Your work is so important. I am forwarding to a friend who is really struggling right now and I know your handy bulleted list will really help them. Thank you so much for your generosity of self and spirit.
Uhm. Also, I am really struggling right now, and you really helped me. Your words always do.
Thank you so much for saying Michael! You have no idea what it means to me to know my words brought you comfort and you didn’t mind getting them in the middle of the night … really being hard on myself for publishing accidentally.
I hope it helps your friend as well. It’s so difficult to exist online right now but for many of us it’s our only real option for connection and companionship. A terribly difficult trade off with all the toxicity and my goal is to help people find ways to make their little corner of the internet a bit more manageable. And to recognize their power … because even those of us who are completely bedbound can still bring about change in our own unique ways!
I honestly feel like I’m running on empty but I find it impossible (and irresponsible) to look away. And it’s not just Trump and American politics! We Canadians are dealing with the Liberal Leadership race, Ford possibly winning another 4 years to continue ransacking Ontario, Alberta’s fictitious COVID report and pretty much anything Danielle Smith or Pierre Poilievre’s mouth.
Thank you for reminding me to take a breath and save a few spoons so I can fight again tomorrow.
Fellow Ontarian here and I agree with everything you’ve said! It’s just so much right now and that’s why I’m trying hard to take more breaks and focus on what I CAN control. Which admittedly isn’t much… but I can write and try and help others get through these challenging times.
I would love a followup on activism strategies online!!! Definitely forwarding this to my friends!
Thanks Marie!! I hope it helps them and I’m glad there’s interest in a follow up!
Amen
Such a great read, saving and sending to my group chat of fellow disableds who are all also struggling, like me, with these same feelings right now.
Thank you Amanda, I hope it helps everyone struggle a little less! These are tough times and anything we can do to keep the community strong is a win.
This was so affirming to read, thank you for your writing! Also, I have a spoon tattoo in honour of being a spoonie
High spoon deficit here. I forgot this fitting analogy. Safety online for disabled is up my alley.
I’ve been using instagram to decompress finding my favorite musicians David Bowie at the top to enjoy and the people are kind to my unique way I interact.
But exercise helped me this morning to manage my health better.
I lost my dog October last year and stopped walking so today forced myself. It gave me a spoonful of energy to read your post.
Thank you for explaining everything so well.
Blessings
So sorry to hear about your high spoon deficit but I’m glad you’ve found ways to still have fun and decompress online!
I can’t get out for walks anymore and I really miss it because it’s a fantastic way to regain a few spoons. I hope you’re able to keep doing it and I’m sorry for the loss of your pup.
Glad you hit publish. It reads clearly just as it is written and doesn’t need any more spoons 💕 I would like to share with an advocacy group I just joined. Me and my best friend were the only ones who masked in the last meeting and there were about sixty people in an enclosed church community space. They were talking about how to reach threatened communities, and the disabled community was not brought up. I would be more comfortable meeting remotely - I mean I love being with people as it is such a rare thing for me - but I definitely feel more comfortable having control of who I share my space with.
I hope it helps! It’s so frustrating when activism and community care organizations aren’t masking. We need to keep people as healthy as possible for the fight ahead.
I’m also working on an article about masking… I figure a lot of people stopped years ago and might be interested in starting again with the public health mess in the US. we’ve learned so much about the best kinds of masks and how to make them fit better etc… So I’m going to put everything in a handy mask guide!
That would be so useful! Thank you!
Everything you say here is true...
I've been 'dysregulated' since Oct. 7 2023
And Pres. Musk has a target on my back
I just wish they'd send the black pill, already
Thank you so much! Shared with my fellow spoonies. 💕
Thank you for reading and sharing Rebecca! I’m glad it was helpful.
I would love to give up Meta but my boys’ school post pictures of their activities that I cannot see in person. I love the candid photos they take in the classrooms too. I limit my scrolling & try not to beat myself up for not giving it up in protest.
I’ve seen some great suggestions for people who want to give it up but can’t for reasons like you described.
I know a lot of people are also in local support groups specific to their disease or chronic illness, and they contain invaluable information which is hard to find elsewhere.
The tips I’ve seen are to only use it for the necessary groups and nothing else. Don’t click on ANY ads or buy any products through it. Don’t click on links or anything which could generate revenue.
It’s a good start and a way to make sure you’re not supporting it any more than absolutely necessary!
Thanks for this. You absolutely published at the right time. 💕
Thank you Krista! I felt so guilty sending something to people’s inboxes at midnight … but thankfully folks don’t seem too mad. I think my poor heart bore the brunt of it because it definitely had a few minutes of panic when it realized what I had done 🤦♀️
I have my electronics on sleep mode at night, as I suspect most do. So don’t worry about notifications going off! Whenever you publish is the right time.
That was my hope! My phone is on airplane whenever I’m trying to sleep because I can’t handle any distractions at all… so hopefully it didn’t wake anyone up!
I always read your twitter posts with gusto
I’m sorry I’m late to the party here
Thank you for this - it will be the catalyst for me to finally move off twitter- God know I seem to be talking to myself as late
Thanks Rudi, that’s so kind of you to say! No need to be sorry, I’m glad to have you here now 😊. You can also find me on Bluesky and Mastodon under the same handle. I’ve been spending less and less time on twitter because it’s so toxic, but don’t want to completely close up while there’s still members of the community who haven’t been able to make the switch elsewhere.
Such a thoughtful, detailed and generous post. Certainly feeling the reverberations over in the UK too. Thank you for caring 💕
Thank you Jane, I appreciate you reading! I feel like everyone across the world is feeling the reverberations… so we probably all need to be extra mindful of spoons.
I thought it seemed odd for you to be posting so late - then I saw your note. Looks good to me though and you give some really sound advice. I too am finding the news lately surreal and depressing, and never thought in my lifetime would I hear an elected official threaten to annex Canada, among other countries. Definitely important to take frequent breaks from the craziness that the news cycle has become...
Definitely odd and I’m kicking myself for my mistake, I’m just hoping folks understand these things happen and find the humour in the situation.
My spoons were so low that I made a mistake and then struggled to take my own advice about unplugging.
That sums up the chronic illness experience. We can do everything “right” and still have something unexpected throw our bodies into chaos… so we don’t need the news of the world adding to that chaos.
I’m glad you found the tips helpful!