When it comes to natural disasters, pandemics, or disruptions to "normal" life, disabled people are proverbial canaries. We get hit harder and faster than others. Why aren't we factored into plans?
I also wanted to say that you are absolutely always deserving of rest and healing! I utterly support you pushing back your deadline.. I've been thinking about how backwards it is that the mainstream advocacy for any maginality falls right smack on the people who are most affected by it. You never owe us anything, but we are so privileged and gratified to be a part of everything that you share. ❤️
Thank you! I struggled so much with that blurb in the email. I wasn’t sure I wanted to call attention to the fact that I was late, started feeling guilty for needing extra time etc.
It’s incredible how we can give great advice to others and be unable to take it ourselves eh?
I think it's actually very common to struggle with your own advice! And very courageous & admirable to admit it.
I know in the herbalism world it's said that it's so much harder to do herbs for yourself than for someone else. Kind of like how helping someone clean is often easier then cleaning your own place?
I bet that links up with the fact that our culture is entirely geared towards avoiding accountability at all costs, we can't face ourselves without elements of shame or internalized ableism. That's also what makes it equally important to do what you did, and admit you're struggling so we can all grow together & unsnarl ourselves from stories that do not serve us 🌱💜🌱 sending you so much love.
Yes I think you're right! Internalized ableism, fear of being 'lazy' etc.
As Paul Gabriel reminds me (I don't think I can tag him here)... a fellow disability advocate who passed away a few months ago used to always say that fear of being seen as lazy was the by product of capitalism and ableism. That we can and should save our spoons however we can.
I hold onto that and try and remind myself as much as possible.
Perhaps the carnage related to the wildfires will focus more attention on the importance of masks which I recognize is hardly a consolation but might be of use in the future
I certainly hope it raises awareness about the benefits of masks! It’s been disappointing seeing the Red Cross and government so unprepared with respect to respirators and clean air.
I’m grateful to the Covid activists who are out there making sure anyone who needs a mask, has one!
Very important message. Governments are strapped and cutting costs, and natural disasters and (hopefully not any more but possibly) outbreaks and pandemics seem to be happening way more often these days. People everywhere would be wise to be even a bit better prepared for anything, and consider ways to help not just themselves but others as well should disaster strike.
I think a bit of preparation and planning can go a long way… and I’m inspired by the work of LA mask blocs and covid activists. They’re really showing what’s possible when you’re committed to caring about others!
It’s fair to say that the American government isn’t broke, it’s been undercharging taxes every Republican administration since Reagan, due to massive tax cuts for the wealthy and large corporations. We were functioning well until Reagan. We need to get that status quo back.
I would just like to see them spend a bit more on preparedness, vulnerable populations, public health etc… there was no good reason they couldn’t have been ready with respirators and clean air in LA. It’s simply not a priority.
Your emphasis on measures to clean the air are spot on. It reminds me of a recent article by Isabelle Kohn at Slate titled "In L.A., We’re Breathing the Ashes of Other People’s Homes"
Her fears over the long-term health effects of the ash echo the concerns you've brought up, especially for disabled people. And how too many people aren't taking even small measures to protect themselves, pr each other
"Maybe, as was the case with COVID, they’re uninterested in succumbing to fear. Maybe they can’t see or smell chemicals in the air, so they believe they’re not there. They walk outside, mask-free. They drive with the windows down. They’re going to live their lives. They have to live their lives.
But I know the consequences could be dire. My own mother was diagnosed with breast cancer last year after surviving the Marshall fire in Superior, Colorado, in 2022."
Kohn went on to write that her mother was relatively healthy, didn't smoke, and had no family history of breast cancer. As you've written before, severe illness and even disability can strike otherwise healthy and able-bodied people anytime
And looking out for vulnerable and disabled people, the "canaries in the coal mine" as you say, is good for everyone and good in itself. Mahalo for such a thorough and thoughtful article!
I actually just restacked an article about the toxic air in LA. It’s definitely something we need to talk about more.
I consider myself a canary when it comes to air quality. Even slight changes are noticeable to me because my MCAS is so severe. I can tell when something is in the air and take steps to protect myself, but most healthy people wouldn’t even notice.
Unfortunately just because you don’t notice doesn’t necessarily mean you’re not experiencing damage … so I hope we can raise awareness and get people to mask up and clean the air in the after math of these fires.
THANK YOU for that line about not noticing. My husband’s sense of smell is not great and whenever I smell toxic chemicals or smoke gone out of control from our fireplace, I complain to him. But he can’t smell it often, and I tell him exactly what you said here: “just because YOU can’t smell it doesn’t mean it’s not harming you.” I’ve banished him to the basement with his Lysol spray and implored him not to breathe it in, even if he doesn’t mind the smell. He just doesn’t get it.
It’s really awful being so hyper sensitive … because we notice everything and yet often can’t convince people to care.
I swear I can even smell when someone is sick… it’s like a sixth sense. But for most people if they can’t see it or smell it then they’re not going to worry about it. Meanwhile VOCs can be in the air AND water and are incredibly harmful.
Thanks so much for sharing that from Paul Gabriel, it's really true. It's also plays into why so much of our oppression is downplayed, because we simply just don't have the spoons that others do. That doesn't make our work, us, ourselves, any less valuable!
Exactly! We have the same value as anyone else, and we must push back on this idea that someone’s worth is directly tied to their health status or economic contribution
I had a chronic pain storm come on last night that left me unable to move. My partner (who is my carer) had popped out to play tennis for a couple of hours. I had been ok all day, but the pain came on so fast, I didn't have time to prepare. I was trapped on my own sofa, unable to get up for food, water, to charge my phone, to get painkillers from the cabinet. I was struck by my complete helplessness. And this morning, I found your words. I have been shouting about COVID for years, but people don't want to hear it. It is comforting to see that other people are connecting these dots, because sometimes I can feel so alone in knowing all this is a pattern. But we can come together in that knowledge and protect our community ❤️
I’m so sorry for your pain storm, I know that helpless feeling far too well.
I’m glad you found my words and they resonated at a time when you needed them.
As you said people really don’t want to hear about Covid, but I’m always encouraged by those who continue to try and get the information out there. I will keep trying, because you never know when you might change a heart and mind.
After I became disabled and could buy another home I chose a home that would be easy to navigate and leave. People kept telling me I should buy a condo but I'd heard too many stories of people trapped when the electricity was off for a week or more after hurricanes. I can't climb stairs.
I have a single story villa with a garage, open floor plan, and double doors on 2 of 3 bedrooms. My late mother understood my decision completely when she became disabled. The garage is great when I am able to drive so I don't have to unload right away. I have a cooler on wheels if I'm worried about perishables.
I've known others in my position that did not put any thought into their mobility needs when moving but I know I can't always rely on others to be there for me.
I’m really glad you had that option and have been able to set yourself up well!
That’s something I’ve been thinking about a lot as I know it’s not the best option for me to be in a condo. There’s some great benefits including easy access to delivery services and lots of neighbours willing to help. But I struggle to control the environment because it’s such dense living (and I’ve got terrible allergies which makes it tough)
Unfortunately a home is completely out of the question where I live, it’s simply not affordable. So I’m constantly looking at ways to make my situation as safe as possible and hoping prices come down one day!
I'm not in a single family home. It's attached to 3 other units, in row house style, half the units are only 2/2, and the exterior is managed like a condo. Single family homes smaller than my unit were much more expensive and I didn't want to deal with exterior maintenance. There are still issues ... but I did not want to deal with the problems of high rise living in a hurricane prone area.
It's a really unfortunate truth! My experience generally backs that up too, unfortunately. And people will deny and dismiss you because having needs is shameful to them, it really reflects more on them than it does you. I understand that's hard to remember when the tangible reality/material existence keeps trying to tell you in so many ways that you are useless to them. It's also MORE labor that falls on an already downtrodden marginalized group of people to prevent yourself to succumbing to all the gaslighting. We have to stick together and keep a close eye on our spoons, & who/what/how has access to them
Yes. So much labour just because others refuse to do the bare minimum or even think about the needs of other people. It’s really sad and I’m so glad we have a supportive online community to lean on!
Yes please make it a series. Of ideas people have come up with to evacuate or stay safe. Thank u for doing this.
My input is- if u r disabled on oxygen being covered by govt ask the oxygen company for a portable generator , and get 2 batterys ( keep them charged) , get all its cables for charging etc. and a carry strap. Put it beside your bed/couch. OntaRio covers it and lets u keep your big home generator as well. Safer than oxygen tanks in vehicles. This gives u a few hours to hopefully get to somewhere safe with electeicity or a generator . Newer batterys will give u more 02 b4 u run out. When u get safe the portable gerator comes with a cord to plug it into the wall. I was physically disabled. Was careful for 4.5 years then a delivery person unknowingly gave me covid which gave me 18 day coma,ards,collapsed lung, pnuemonia, delerium, 2mth in hospital. 6 mth later i still have oxygen just in case. Still in physio too stubborn to give up. But a fire wud cause me a major problem fast.. I have the equivelent of 1/2 a lung. Covid kills, disables and destroys famies. It can happen to anyone , anytime . O forgot to say you need a doctors prescription to b eligible for 02. Stay safe. I hope this helps someone.
Thank you for sharing your important tips Linda, and I'm so sorry for the struggles you're going through.
Do you have HEPA filters in your home? They would help in the event we get hit with worsening wildfire smoke in the summer (I'm in Ontario too and really worried it'll be worse this year)
Thank you for this very important information. Don't worry for a second about taking your time. All things get done in due time. No need to push yourself. Earlier this week, I wrote my own post about the way the disabled are overlooked and almost punished for their own problems. In the U.S., congress is poised to push through a funding bill that would slash Medicare and strip healthcare from millions of disabled people. It's maddening that we are the first to go when it's time to make cuts.
We seem to be the first to go in all scenarios and it’s so cruel. We deserve better.
As you said in your post, poverty and disability are often intertwined and if we would acknowledge and address that (and stop blaming people) I think it would go a long way towards bringing about meaningful change.
A lot of the time, society seems to blame people for their socioeconomic status because they see success or failure as entirely within a person's control. I doubt that most people stop to think about the many variables that might be involved in a situation. It only takes one bad accident or serious illness to entirely destroy someone's financial situation.
I think in some cases people actively go out of their way to avoid thinking about it. I suspect that’s why some get some angry when you bring up Covid or masking. They don’t like to be reminded that for some people one infection was all it took to leave them severely disabled. Easier to blame the victim and tell yourself it won’t happen to you.
Hi Kelly! Thank you so much for writing this, and I'm so sorry that happened to you when your air conditioner went out, that's so entirely unacceptable and horrifying. You deserve so much better, safety, physical & emotional. We all do.
Heat + sun radiation is one of the hardest triggers to manage for me too. I would love to continue to talk about disaster preparedness, especially after we had to move our entire farm + animals for Hermits Peak/Calf Canyon fire.
I want you to know that you are simply an amazing human, and the world is goddamn lucky to have you. Just because the world doesn't acknowledge your value doesn't mean you aren't the most valuable person in the room. I will always stand with you.
Thank you so much Geneva - this was a lovely comment to read and made my heart full!
I feel like those without our conditions struggle to understand what heat can do to our bodies. Many people were dubious I was going downhill that quickly - but I 100% was. I’ve been working on contingency plans in case it ever happens again… but it’s so hard to plan for every single contingency.
I’m definitely thinking about making this into a series about disaster planning and prepping when living with chronic illness!
I understand, people literally never believe I'm as sensitive as I am. I can be there literally with my face swelling up asking someone with fragrances to please just give me some space so I can leave, and they will just antagonize me. I understand the heat too, I live in New Mexico and it gets so hot that starting in like May I can't be outside unless it's dawn or dusk, I have to plan my entire life around that because I have animals + plants. We don't have AC either, so even that isn't enough for me sometimes. I also only have one supportive person in the whole community so it's scary being a part sometimes. I recently decided that I should just go nocturnal 😂 I hope you are feeling better today Kelly! 🫶🏻
Yeah I find most won’t ever understand it until it happens to them. When I wake up I can literally tell if the outdoor air quality is bad based on how swollen and wheezy I am. And that’s with multiple air purifiers running. It’s an exhausting game of whack a mole trying to stay ahead of all the triggers.
Whackamole is a great analogy for dealing with MCAS triggers! It's so much extra money also, for the air filters, water filters, very very specific foods, organic produce, chemical free space/furniture + products/alternatives. Trying to balance that in a late stage capitalist society is absolutely outrageous
Yes exactly! I just found out that I can apparently claim my filters on my taxes as a medical expense and it felt like Christmas. Which is really sad, but these costs add up and there’s little support for most of them!
I agree with everything you wrote. However, we need to really push back and organize, as disability activists did in the 1970s and 1980s around 504 and the ADA: virtual rallies and hybrid events in order to force the government to do its job and protect all of us. That is why I am planning a virtual rally on March 1st because, between the COVID and LA fires, enough is enough!
I dont think people see disabled lives as worthless to the point they think they're better off dead. Those masks were horrendous, they triggered off my trigeminal neuralgia, but that didn't seem to matter.
People don't think about disabled people, it's not intentional. There's a lot more that could be done but that's life. Im not going to live in fear of what ifs, because that's even more life limiting.
I’m sorry the masks triggered your TM - I know that can be very painful.
I think for the majority of people however, masks don’t present any issue. They’re not uncomfortable or painful. People just didn’t want to wear them. So they stopped. Many regret their decision after ending up with life altering Long Covid.
I also think it’s important we distinguish between “living in fear” and being prepared. My publication (and this article) are designed to raise awareness about areas that need improvement so that people with disabilities can be safer.
If we ignore the warning signs, nothing will change. It can be empowering to put safety plans in place and rally with your community to protect the vulnerable. For me it feels like the opposite of living in fear.
I recently heard a therapist say that fear is a rational response to an actual danger or threat, while anxiety is an irrational or disproportionate response to a non-imminent or likely danger or threat. That shifted things for me a bit. I don’t want fear to rule my life, certainly, but we already know what this virus can do to our bodies. So it’s an entirely rational response to fear it.
Yes exactly. It’s a rational response and there are steps we can take to be responsible about our level of risk without being crippled by fear.
I think that’s what people need to understand. You can have humility in the face of a novel virus without letting it “rule your life”. It’s all about adapting.
What a trial, Kelly, I'm so sorry! And what a helpless feeling it is, knowing no one is coming to save or even just help you. Society does see us as expendable and an afterthought yet, sigh. Thank you for writing so eloquently again. You have a way with words.
I also wanted to say that you are absolutely always deserving of rest and healing! I utterly support you pushing back your deadline.. I've been thinking about how backwards it is that the mainstream advocacy for any maginality falls right smack on the people who are most affected by it. You never owe us anything, but we are so privileged and gratified to be a part of everything that you share. ❤️
Thank you! I struggled so much with that blurb in the email. I wasn’t sure I wanted to call attention to the fact that I was late, started feeling guilty for needing extra time etc.
It’s incredible how we can give great advice to others and be unable to take it ourselves eh?
I think it's actually very common to struggle with your own advice! And very courageous & admirable to admit it.
I know in the herbalism world it's said that it's so much harder to do herbs for yourself than for someone else. Kind of like how helping someone clean is often easier then cleaning your own place?
I bet that links up with the fact that our culture is entirely geared towards avoiding accountability at all costs, we can't face ourselves without elements of shame or internalized ableism. That's also what makes it equally important to do what you did, and admit you're struggling so we can all grow together & unsnarl ourselves from stories that do not serve us 🌱💜🌱 sending you so much love.
Yes I think you're right! Internalized ableism, fear of being 'lazy' etc.
As Paul Gabriel reminds me (I don't think I can tag him here)... a fellow disability advocate who passed away a few months ago used to always say that fear of being seen as lazy was the by product of capitalism and ableism. That we can and should save our spoons however we can.
I hold onto that and try and remind myself as much as possible.
Paul Gabriel
Perhaps the carnage related to the wildfires will focus more attention on the importance of masks which I recognize is hardly a consolation but might be of use in the future
I certainly hope it raises awareness about the benefits of masks! It’s been disappointing seeing the Red Cross and government so unprepared with respect to respirators and clean air.
I’m grateful to the Covid activists who are out there making sure anyone who needs a mask, has one!
Very important message. Governments are strapped and cutting costs, and natural disasters and (hopefully not any more but possibly) outbreaks and pandemics seem to be happening way more often these days. People everywhere would be wise to be even a bit better prepared for anything, and consider ways to help not just themselves but others as well should disaster strike.
I think a bit of preparation and planning can go a long way… and I’m inspired by the work of LA mask blocs and covid activists. They’re really showing what’s possible when you’re committed to caring about others!
It’s fair to say that the American government isn’t broke, it’s been undercharging taxes every Republican administration since Reagan, due to massive tax cuts for the wealthy and large corporations. We were functioning well until Reagan. We need to get that status quo back.
I would just like to see them spend a bit more on preparedness, vulnerable populations, public health etc… there was no good reason they couldn’t have been ready with respirators and clean air in LA. It’s simply not a priority.
Hopefully that changes in the future!
Your emphasis on measures to clean the air are spot on. It reminds me of a recent article by Isabelle Kohn at Slate titled "In L.A., We’re Breathing the Ashes of Other People’s Homes"
Her fears over the long-term health effects of the ash echo the concerns you've brought up, especially for disabled people. And how too many people aren't taking even small measures to protect themselves, pr each other
"Maybe, as was the case with COVID, they’re uninterested in succumbing to fear. Maybe they can’t see or smell chemicals in the air, so they believe they’re not there. They walk outside, mask-free. They drive with the windows down. They’re going to live their lives. They have to live their lives.
But I know the consequences could be dire. My own mother was diagnosed with breast cancer last year after surviving the Marshall fire in Superior, Colorado, in 2022."
Kohn went on to write that her mother was relatively healthy, didn't smoke, and had no family history of breast cancer. As you've written before, severe illness and even disability can strike otherwise healthy and able-bodied people anytime
And looking out for vulnerable and disabled people, the "canaries in the coal mine" as you say, is good for everyone and good in itself. Mahalo for such a thorough and thoughtful article!
I actually just restacked an article about the toxic air in LA. It’s definitely something we need to talk about more.
I consider myself a canary when it comes to air quality. Even slight changes are noticeable to me because my MCAS is so severe. I can tell when something is in the air and take steps to protect myself, but most healthy people wouldn’t even notice.
Unfortunately just because you don’t notice doesn’t necessarily mean you’re not experiencing damage … so I hope we can raise awareness and get people to mask up and clean the air in the after math of these fires.
THANK YOU for that line about not noticing. My husband’s sense of smell is not great and whenever I smell toxic chemicals or smoke gone out of control from our fireplace, I complain to him. But he can’t smell it often, and I tell him exactly what you said here: “just because YOU can’t smell it doesn’t mean it’s not harming you.” I’ve banished him to the basement with his Lysol spray and implored him not to breathe it in, even if he doesn’t mind the smell. He just doesn’t get it.
It’s really awful being so hyper sensitive … because we notice everything and yet often can’t convince people to care.
I swear I can even smell when someone is sick… it’s like a sixth sense. But for most people if they can’t see it or smell it then they’re not going to worry about it. Meanwhile VOCs can be in the air AND water and are incredibly harmful.
Thanks so much for sharing that from Paul Gabriel, it's really true. It's also plays into why so much of our oppression is downplayed, because we simply just don't have the spoons that others do. That doesn't make our work, us, ourselves, any less valuable!
Exactly! We have the same value as anyone else, and we must push back on this idea that someone’s worth is directly tied to their health status or economic contribution
Thank you for writing this, you have put so many of my thoughts into words.
You’re so welcome. I’m glad you found it helpful! I’m sorry many of us are in this situation.
I had a chronic pain storm come on last night that left me unable to move. My partner (who is my carer) had popped out to play tennis for a couple of hours. I had been ok all day, but the pain came on so fast, I didn't have time to prepare. I was trapped on my own sofa, unable to get up for food, water, to charge my phone, to get painkillers from the cabinet. I was struck by my complete helplessness. And this morning, I found your words. I have been shouting about COVID for years, but people don't want to hear it. It is comforting to see that other people are connecting these dots, because sometimes I can feel so alone in knowing all this is a pattern. But we can come together in that knowledge and protect our community ❤️
I’m so sorry for your pain storm, I know that helpless feeling far too well.
I’m glad you found my words and they resonated at a time when you needed them.
As you said people really don’t want to hear about Covid, but I’m always encouraged by those who continue to try and get the information out there. I will keep trying, because you never know when you might change a heart and mind.
After I became disabled and could buy another home I chose a home that would be easy to navigate and leave. People kept telling me I should buy a condo but I'd heard too many stories of people trapped when the electricity was off for a week or more after hurricanes. I can't climb stairs.
I have a single story villa with a garage, open floor plan, and double doors on 2 of 3 bedrooms. My late mother understood my decision completely when she became disabled. The garage is great when I am able to drive so I don't have to unload right away. I have a cooler on wheels if I'm worried about perishables.
I've known others in my position that did not put any thought into their mobility needs when moving but I know I can't always rely on others to be there for me.
I’m really glad you had that option and have been able to set yourself up well!
That’s something I’ve been thinking about a lot as I know it’s not the best option for me to be in a condo. There’s some great benefits including easy access to delivery services and lots of neighbours willing to help. But I struggle to control the environment because it’s such dense living (and I’ve got terrible allergies which makes it tough)
Unfortunately a home is completely out of the question where I live, it’s simply not affordable. So I’m constantly looking at ways to make my situation as safe as possible and hoping prices come down one day!
I'm not in a single family home. It's attached to 3 other units, in row house style, half the units are only 2/2, and the exterior is managed like a condo. Single family homes smaller than my unit were much more expensive and I didn't want to deal with exterior maintenance. There are still issues ... but I did not want to deal with the problems of high rise living in a hurricane prone area.
It's a really unfortunate truth! My experience generally backs that up too, unfortunately. And people will deny and dismiss you because having needs is shameful to them, it really reflects more on them than it does you. I understand that's hard to remember when the tangible reality/material existence keeps trying to tell you in so many ways that you are useless to them. It's also MORE labor that falls on an already downtrodden marginalized group of people to prevent yourself to succumbing to all the gaslighting. We have to stick together and keep a close eye on our spoons, & who/what/how has access to them
Yes. So much labour just because others refuse to do the bare minimum or even think about the needs of other people. It’s really sad and I’m so glad we have a supportive online community to lean on!
Me too!! Thank you so much for doing the legwork to create this community, and as ever for your brilliant efforts & amazing words
Yes please make it a series. Of ideas people have come up with to evacuate or stay safe. Thank u for doing this.
My input is- if u r disabled on oxygen being covered by govt ask the oxygen company for a portable generator , and get 2 batterys ( keep them charged) , get all its cables for charging etc. and a carry strap. Put it beside your bed/couch. OntaRio covers it and lets u keep your big home generator as well. Safer than oxygen tanks in vehicles. This gives u a few hours to hopefully get to somewhere safe with electeicity or a generator . Newer batterys will give u more 02 b4 u run out. When u get safe the portable gerator comes with a cord to plug it into the wall. I was physically disabled. Was careful for 4.5 years then a delivery person unknowingly gave me covid which gave me 18 day coma,ards,collapsed lung, pnuemonia, delerium, 2mth in hospital. 6 mth later i still have oxygen just in case. Still in physio too stubborn to give up. But a fire wud cause me a major problem fast.. I have the equivelent of 1/2 a lung. Covid kills, disables and destroys famies. It can happen to anyone , anytime . O forgot to say you need a doctors prescription to b eligible for 02. Stay safe. I hope this helps someone.
Thank you for sharing your important tips Linda, and I'm so sorry for the struggles you're going through.
Do you have HEPA filters in your home? They would help in the event we get hit with worsening wildfire smoke in the summer (I'm in Ontario too and really worried it'll be worse this year)
Thank you for this very important information. Don't worry for a second about taking your time. All things get done in due time. No need to push yourself. Earlier this week, I wrote my own post about the way the disabled are overlooked and almost punished for their own problems. In the U.S., congress is poised to push through a funding bill that would slash Medicare and strip healthcare from millions of disabled people. It's maddening that we are the first to go when it's time to make cuts.
We seem to be the first to go in all scenarios and it’s so cruel. We deserve better.
As you said in your post, poverty and disability are often intertwined and if we would acknowledge and address that (and stop blaming people) I think it would go a long way towards bringing about meaningful change.
A lot of the time, society seems to blame people for their socioeconomic status because they see success or failure as entirely within a person's control. I doubt that most people stop to think about the many variables that might be involved in a situation. It only takes one bad accident or serious illness to entirely destroy someone's financial situation.
I think in some cases people actively go out of their way to avoid thinking about it. I suspect that’s why some get some angry when you bring up Covid or masking. They don’t like to be reminded that for some people one infection was all it took to leave them severely disabled. Easier to blame the victim and tell yourself it won’t happen to you.
Hi Kelly! Thank you so much for writing this, and I'm so sorry that happened to you when your air conditioner went out, that's so entirely unacceptable and horrifying. You deserve so much better, safety, physical & emotional. We all do.
Heat + sun radiation is one of the hardest triggers to manage for me too. I would love to continue to talk about disaster preparedness, especially after we had to move our entire farm + animals for Hermits Peak/Calf Canyon fire.
I want you to know that you are simply an amazing human, and the world is goddamn lucky to have you. Just because the world doesn't acknowledge your value doesn't mean you aren't the most valuable person in the room. I will always stand with you.
Thank you so much Geneva - this was a lovely comment to read and made my heart full!
I feel like those without our conditions struggle to understand what heat can do to our bodies. Many people were dubious I was going downhill that quickly - but I 100% was. I’ve been working on contingency plans in case it ever happens again… but it’s so hard to plan for every single contingency.
I’m definitely thinking about making this into a series about disaster planning and prepping when living with chronic illness!
I understand, people literally never believe I'm as sensitive as I am. I can be there literally with my face swelling up asking someone with fragrances to please just give me some space so I can leave, and they will just antagonize me. I understand the heat too, I live in New Mexico and it gets so hot that starting in like May I can't be outside unless it's dawn or dusk, I have to plan my entire life around that because I have animals + plants. We don't have AC either, so even that isn't enough for me sometimes. I also only have one supportive person in the whole community so it's scary being a part sometimes. I recently decided that I should just go nocturnal 😂 I hope you are feeling better today Kelly! 🫶🏻
Yeah I find most won’t ever understand it until it happens to them. When I wake up I can literally tell if the outdoor air quality is bad based on how swollen and wheezy I am. And that’s with multiple air purifiers running. It’s an exhausting game of whack a mole trying to stay ahead of all the triggers.
Whackamole is a great analogy for dealing with MCAS triggers! It's so much extra money also, for the air filters, water filters, very very specific foods, organic produce, chemical free space/furniture + products/alternatives. Trying to balance that in a late stage capitalist society is absolutely outrageous
Yes exactly! I just found out that I can apparently claim my filters on my taxes as a medical expense and it felt like Christmas. Which is really sad, but these costs add up and there’s little support for most of them!
I agree with everything you wrote. However, we need to really push back and organize, as disability activists did in the 1970s and 1980s around 504 and the ADA: virtual rallies and hybrid events in order to force the government to do its job and protect all of us. That is why I am planning a virtual rally on March 1st because, between the COVID and LA fires, enough is enough!
I dont think people see disabled lives as worthless to the point they think they're better off dead. Those masks were horrendous, they triggered off my trigeminal neuralgia, but that didn't seem to matter.
People don't think about disabled people, it's not intentional. There's a lot more that could be done but that's life. Im not going to live in fear of what ifs, because that's even more life limiting.
I’m sorry the masks triggered your TM - I know that can be very painful.
I think for the majority of people however, masks don’t present any issue. They’re not uncomfortable or painful. People just didn’t want to wear them. So they stopped. Many regret their decision after ending up with life altering Long Covid.
I also think it’s important we distinguish between “living in fear” and being prepared. My publication (and this article) are designed to raise awareness about areas that need improvement so that people with disabilities can be safer.
If we ignore the warning signs, nothing will change. It can be empowering to put safety plans in place and rally with your community to protect the vulnerable. For me it feels like the opposite of living in fear.
I recently heard a therapist say that fear is a rational response to an actual danger or threat, while anxiety is an irrational or disproportionate response to a non-imminent or likely danger or threat. That shifted things for me a bit. I don’t want fear to rule my life, certainly, but we already know what this virus can do to our bodies. So it’s an entirely rational response to fear it.
Yes exactly. It’s a rational response and there are steps we can take to be responsible about our level of risk without being crippled by fear.
I think that’s what people need to understand. You can have humility in the face of a novel virus without letting it “rule your life”. It’s all about adapting.
What a trial, Kelly, I'm so sorry! And what a helpless feeling it is, knowing no one is coming to save or even just help you. Society does see us as expendable and an afterthought yet, sigh. Thank you for writing so eloquently again. You have a way with words.