It’s been a particularly difficult week where I’ve been let down by a number of people who I thought had my back… and the rampant ableism in society is wearing on me.
I revisited one of the first articles I wrote about being disabled & chronically ill… and am saddened that nothing has changed. Things haven’t improved and if anything people are LESS tolerant & more ableist now than a year ago.
It all started when someone said to me “you’ve been sick for years - just die already”. Whenever I think of that statement I find myself wondering if people would have EVER said something like that before Covid. Many may have thought it - but would they verbalize it?
The pandemic is fueling hatred of disabled and chronically ill people to the point where they will say the cruelest things without a second thought - and it’s leading nowhere good.
“North Carolina Shelves Controversial Mask Ban Bill Amid Public Outcry”
“North Carolina's House Bill 237, which aimed to criminalize wearing masks in public, has been temporarily shelved due to widespread online protests and petitions.”
A few months ago a friend told me I needed to stop “being a burden” on those around me & find somewhere with round the clock care to live & accommodate my disabilities. Knowing no such place exists for someone like me - I gave them a challenge.
I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.
We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.
Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.
The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.
And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?
In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.
Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.
Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.
I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?
Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.
This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.
Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.
Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.
When you don’t - they abandon you.
People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.
When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people.
I understand it’s not something anyone wants to think about. The idea of being sick forever with no end in sight is understandably scary. But just because something is scary doesn’t mean it’s not real. It doesn’t mean it’s fake or an exaggeration.
The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it.
It often starts with comments like “I’m sure it can’t be THAT bad” or “you just need to try harder”.
Gaslighting remarks that are disguised as kindess when in reality they tell us you don’t believe us. Then people start asking “are you better YET?”
That one really hurts because the emphasis is always on the “yet”. It’s as though our still being sick is an inconvenience to THEM. No thought is ever given to how awful it makes us feel to have to explain for the millionth time that we aren’t ever getting better.
These exchanges go on for awhile until they succeed in either pushing us away - or they inevitably ghost us. But the result is always the same. Friends and family lost from our lives & us facing our illness alone.
This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up.
Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid.
All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection.
I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it.
I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do.
Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.
We need allies we can count on to be there to support us. Who believe us.
My ask of all people tonight is to take a moment and think of the sickest you ever were - whether that be a flu or Covid, food poisoning or surgery recovery - and imagine feeling that way for the rest of your life. Imagine knowing there was no end in sight.
Once you imagine that - consider how hard that reality might be in a world that’s screaming at you to “just stay home” or blaming you incessantly for covid mitigations. In a world that doesn’t even think you deserve safe access to healthcare. In a world embracing euthanasia.
Now reach out to a disabled or chronically ill person in your life. Tell them they’re cared for. Ask if they need any support. If you don’t know any disabled people …
Find an account on here & follow and amplify them. I promise we need that support now more than ever.
I remember when it felt like the "new normal" might be that most everyone would at least continue to mask in critical public spaces like hospitals, grocery stores, and pharmacies for the foreseeable future (I know not everywhere ever had this, but in the area I live in, there was a glimmer). It would buy time while we learned more about the virus & buildings could work on improving ventilation & air filtration, etc. It would be inconvenient but entirely doable.
The proposed mask ban in North Carolina will turn people who are trying to protect their health (and the health of others) into criminals.
While the action of the government doesn’t surprise me - the response of the public does. I expected most people to find this type of law appalling - and instead I’m seeing people celebrating what I consider to be eugenics in action.
I wrote about the proposed bill, the public response and the disability community’s right to survive:
NC are proposing a bill to ban masks (including medical masks) in public settings. This is not only discriminatory - it’s dangerous. It’s removing the LAST tool we have to protect against COVID.
It also sets dangerous precedent & fuels damaging narratives about COVID.
The proposed bill would see all masks banned in public settings. If a person requires a mask - they would need to have a medical exemption. Disabled people are exhausted. We’ve been forced into dangerous situations for 4 years thanks to “you do you” COVID policy.
To now expect us to do additional work to procure a medical exemption just to be able to wear a respirator to help us prevent death or further disability? It’s unnecessarily cruel. Doctor’s appts & notes cost money. They’re not accessible to everyone.
COVID mitigation is already a significant social justice issue. By virtue of the fact our governments and public health have done nothing to protect people - individuals are left to procure protection for themselves. This protection isn’t affordable for everyone.
Respirators, HEPA filters, rapid tests, far UV… all these tools are out of financial reach for many people. We have fantastic organizations attempting to get respirators into the hands of those who need them - but some people are always left behind.
Now we’re adding an additional barrier by putting the burden of proof that a mask is required on the disabled individual. We’re forcing them to risk exposure to go to a doctor, spend money out of pocket for a note and then carry it around in the hopes they don’t get arrested?
If governments and public health would take Covid more seriously -
People wouldn’t need to don respirators nearly as often. But when the powers that be take away access to vaccines & anti-virals, refuse to clean the air, provide testing or paid sick leave? We have no choice.
Even if everything goes perfectly (which rarely happens) and a person has access to a respirator, can afford to see a doctor & obtain medical exemption… there’s still a good chance they’ll be forced to remove their mask while law enforcement analyze the exemption’s legitimacy
COVID infects extremely quickly. Breaking the seal on your respirator - even briefly - can result in infection. We’re asking people to jump through an inordinate amount of hoops and spend ridiculous amounts of money only to quite possibly end up infected anyways.
There’s also a bigger issue that stems from the idea that the “medically vulnerable” can and should obtain an exemption. It continues to drive the narrative that Covid is ONLY a threat to people who are already vulnerable. Which we know is untrue.
COVID is a multi system disease that has a 10% chance of causing disability. The odds of Long Covid go up with each infection. It’s not 10% in those that are already vulnerable - it’s everyone. Many young & healthy people have had their lives ruined by this disease.
The lie that only the vulnerable need to be concerned is one of the most devastating of the pandemic. People are getting infected over & over & think they’ve “gotten away with it”….When there’s good odds that they’ve got silent damage & their next infection will disable them
It also propagates the notion that the vulnerable are expendable. That it’s ok if we die or become further disabled because the rest of the world needs to “go back to normal”. There’s nothing normal about a society that turns its back on others.
This desperation to return to the way the world was in 2019 is quite literally killing people. It’s ruining lives. It’s dividing people, straining healthcare systems and causing long term health consequences that will have ripple effects for decades to come.
This NC bill to ban masks is just the latest in a string of terrible decisions that are costing lives. And it didn’t have to be this way. Had we admitted Covid was airborne and worked to implement clean air standards - we wouldn’t be in such a dire situation now.
I got another #COVID booster a few days ago. Tomorrow I will order another batch of N95 masks for my family. I will continue to get COVID boosters and continue to wear N95 masks for as long as they're available until and unless something meaningful is actually done about this ongoing pandemic so many seem eager to pretend isn't ongoing. I expect to mask in public spaces for the rest of my life.
A great article from Julia Doubleday about our failed pandemic response. “Forever reinfections” is not the way out of pandemic.
I weep for lack of common sense these days. Herd immunity is NOT coming to save us & I want to know how many infections people need to get before they realize?
The sheer amount of people who stopped wearing masks as soon as they were optional demonstrates how many people never understood why they were wearing them in the first place, which is a tremendous and ongoing failure of institutional public health
Disabled people are not ok. The pandemic has turned society against us (even more than before).
People were quietly ableist before. Now they’re openly hateful.
It was hard to access healthcare before. Now it’s impossible.
It was lonely before. Now it’s a pit of despair
It’s been an incredibly difficult 4 years for disabled and vulnerable individuals. We’ve had to endure terror of knowing we will be triaged out of medical care if system is overwhelmed, have DNRs forced on us & are witnessing aggressive expansion of medically assisted death
We’ve watched as the world clamours to get “back to normal” while completely leaving us behind. We are told to “just stay home” because people don’t want to push for clean air initiatives and can’t be bothered to mask.
Even in hospitals - the one place we have no choice but to go - masking is not required & you run the risk of being labeled difficult or anxious for requesting a HCW mask in your presence. We’re expected to just go along and risk our health & baseline for the comfort of others
When we speak up - we’re shouted down by people who are utterly convinced that the pandemic is over and there’s no risk. We’re told we’re wrong, exaggerating, hypochondriacs or worse. We endure endless trolling & criticism for just wanting to survive.
It didn’t used to be like this. Ableism has always existed - but it was never as aggressively in your face as it is now. People are experiencing trauma from Covid… and rather than cope with it they seem to be lashing out at disabled individuals.
I don’t know if it’s because many mitigations were sold as a means of protecting the vulnerable - or maybe it’s just because we represent a reality people can’t face.
That health is not a permanent state. That Covid is not over and that anyone can become disabled at any time
Whatever the reason - the result is the same. A society that treats disabled people as “less than”. That wants us out of sight & out of mind and that won’t do the bare minimum to protect us. That look the other way when we tell them eugenicist policies are going to end lives
It’s exhausting and terrifying and sad. I’m tired. We are ALL tired. Yet so many of us spend whatever incredibly limited energy we have continuing to advocate for safe public spaces, safe healthcare and an end to eugenics. We fight for equality. And we need allies.
Please remember this the next time you’re entering a public space without a mask. Or tempted to mock a vulnerable person for wearing one. Or accessing healthcare. If it’s easy for you access care - try and imagine how scary it would be if it wasn’t.
Try and have compassion and empathy for people who are different than you. Try and face the difficult truth that one day you too will be disabled - and when that day comes you will want to be treated better than we are currently being treated.
I promise you it’s far easier to advocate from a position of health & strength… so join us. Be our allies. Listen & believe us when we tell stories of unsafe spaces, eugenics and discrimination. Help us change things so that everyone will be better off. /end
With health agencies like these, what could possibly go right?
"After two years of argument and discussion, it has officially rebranded airborne viral transmission as “through the air” transmission. Airborne particles aren’t aerosol anymore; they’re “Infectious Respiratory Particles,” or IRPs. Jargony language aside, the major practical implications of this document are that, unlike previous airborne infection control guidance, their new guidance will not, in fact, control airborne infections."
Another train trip with at least two sick people in the carriage coughing their heart and lung out. Mine is the only mask anywhere to be seen. Covid or something else - People just really think it’s not an issue to make others sick. I’m having a hard time accepting this and I do have the urge to go there and yell at them. But I would be seen as the unreasonable person. It’s sad 😷 #CovidIsNotOver#COVIDisAirborne#MaskUp
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
For the record, Taylor Swift and her team still implement multiple COVID precautions in 2024 including restricting interactions and activities with people outside of her bubble, and wearing masks.
what the fuck do we do. theyve destroyed communication in gaza. they keep bombing. we don't even know how bad it is. if it was that bad when the world was watching. Jesus.
From People’s CDC: TAKE ACTION BY TUES JUNE 10 - Tell CMS: Hospitals Must Report COVID Infections and Protect Patients from Hospital Acquired COVID Infections!
"But if the plight of adults with long COVID remains poorly understood, the millions of children who have it worldwide are practically invisible, their suffering — and the formative years they're losing to this disease — obscured by the myths that COVID is "harmless" for kids and the pandemic is "over".