Disabled People are the Canaries in the Coal Mine

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?

The California wildfires which have devastated Los Angeles are serving as an important reminder of the need to have an emergency plan - especially if you’re disabled or chronically ill.

I’ve spent days watching videos of people fleeing their homes. They’re running from the flames and jumping in cars or on bikes to escape fast moving fires.

What happens to those who can’t run? Who can’t drive or who have no mobility? Those dependent on others for survival or who have complex medical needs and equipment? Even if they could run from their home, they can’t leave that life sustaining equipment behind. How are we protecting them?

I originally planned this article after suffering an extreme weather event of my own. It was nothing like the fires in California, but it was bad enough that many of my neighbours evacuated my high rise complex which made me realize how ‘stuck’ I was.

I shared the story on social media in a post about disabled people being the canaries in the coal mine. Anything that can or will harm others will likely hit us harder and faster than our non-disabled peers.

Given this fact, why aren’t we factored into disaster planning, emergency preparedness and pandemic discussions? If your plan takes into account the needs of disabled people, everyone would be better protected.

I think we all know why we aren’t taken into account. Many people see us as ‘better off dead.’ They have decided that we can’t possibly have enough quality of life to warrant being saved.

It’s an erroneous narrative that many disability advocates fight tirelessly against. No one else should have the right to determine what makes another person’s life worth living, yet it happens all too often where disabled people are concerned.

Is it any surprise then that we are often the first to be left behind in disaster scenarios? The first to lose access to medical care in triage situations? The first to be labelled ‘expendable’ when resources need to be rationed? Of course not.

Image Description: An illustration of a canary in a coal mine holding a strike sign. He’s wearing a hard hat and boots. Image by Birdee Blake

The Day I Realized I Was a Canary

As I mentioned above, a recent emergency left me shaken by the realization of how few options I (and many others) have.

This past summer there was a severe multi day heatwave where I live - with no relief even at night. I’m in a high rise apartment on an upper floor surrounded by glass buildings. There’s no shade and it is very difficult to get a breeze because the surrounding buildings block the wind. Even with air conditioning, these units get hot.

You’re lucky to maintain a daytime temp of 23 degrees with AC running full blast. If it’s not working or turned off - the apartment becomes a pressure cooker within hours.

That’s exactly what happened to me. The air conditioning broke for our entire building. I was the first person who noticed, because as I said, disabled people are the canaries in the coal mine.

The air was still blowing, but it was no longer cold. It was ‘cool’. A shift imperceptible to those without sensitivities… but very noticeable to me.

I called building management and was brushed off because the air was still blowing. I posted in our online group and many neighbours said their AC was working ‘fine’. I kept asking folks to go and actually FEEL the air coming out of their vent, but no one believed me.

My building uses what is called a fan coil unit to cool and heat apartments. There’s a giant chiller filled with cold water on the roof. The water runs through the pipes and the fans in each unit blow air over them to create the ‘air conditioning’. If the chiller breaks, it can take a few hours before the pipes lose their cooling.

This delay was exactly why I was unable to convince anyone there was a problem. The fans were still blowing ‘cold enough’ for most people but not for someone like me. Eventually they warmed up and everyone began complaining, but the three hour delay meant that there was no longer anyone on site to fix things.

It got bad fast. What was merely uncomfortable became unbearable as every unit began heating up.

If it were just my apartment - it would be slightly more manageable as there would be cool air around me. Since it was the entire building - temps rose extremely fast. Within four hours my unit was thirty degrees and climbing a degree an hour. I was running fans with ice packs in front of them and it was barely making a difference.

Because I suffer from POTS, MCAS and low blood pressure, heat is dangerous for me. I faint more often in hot and humid temperatures. POTS causes blood to pool in the lower half of your body, depriving your heart and brain of necessary oxygen. This worsens in extreme conditions.

While I know how to manage my conditions and what to do to avoid fainting, my safety plans go out the window when there’s a considerable shift in my environment.

Naturally I was concerned. We had no ETA for when it would be fixed - and the next day was forecasted to be even hotter.

Then I realized that most of my neighbours were simply leaving. Going to a movie, out for dinner or to the mall. They were able to escape the heat. They saw it as a non-event because there were places they could go to cool off. They weren’t trapped.

It was in that moment that I realized how precarious my situation was. I’m housebound and unable to leave without assistance. I don’t drive. I’m immune compromised and can’t hang out indefinitely in public spaces because no one takes Covid precautions. I have to be horizontal at all times which is difficult to do outside the home.

The only option for me would be to go to the hospital - which ironically would likely be more dangerous than going to a mall or a movie given the risk of hospital acquired infections.

I felt unbelievably and hopelessly trapped - and that feeling was arguably worse than the heat.

Knowing that I had no way out was terrifying. I was monitoring my vitals and watching them decompensate in real time, panicked that I might lose consciousness before finding someone to come and help me.

No one should have to feel this way. Yet many disabled and elderly people are faced with these horrendous situations all the time - it’s just rarely discussed unless someone dies (and sometimes not even then).

Those of us with the fewest options end up in the most danger. If I lived in a house - I could call an emergency repair person. I could go into the basement. The temperature wouldn’t climb as fast. If I weren’t housebound - I could leave until things improved.

All I could do was stay laying down with cold water and ice and hope that it was fixed before I passed out or required the hospital. I was completely at the mercy of other people and it was not a good feeling.

What worried me most about this situation was the realization that I’m not alone in my fear. That I’m fortunate to even have AC as there are many people who can’t afford the privilege. There’s others who are unhoused and can’t ever escape the elements.

My AC was thankfully fixed relatively quickly, and I did have friends who stepped up to help me and offered me a place to stay. But the experience was a wake up call with respect to how unprepared I am for emergencies, as well as how vulnerable I am to any extreme events or disruptions.

My disabilities have taken away much of my physical resilience, and that realization was terrifying. I’m the canary in the coal mine. Many of us are. We’re already experiencing the pain of pandemics, climate change and the various issues they bring with them.

We are trying to warn you, the lucky ones who still have their health, their homes and their resilience. We’re asking you to save the canaries because in doing so, you will also save yourselves.

Photo by Matt Palmer on Unsplash

Image Description: A photo of wildfires on a ridge with smoke in the background.

The California Wildfires

Wildfires have been raging in California for days, wiping out homes and businesses, destroying the air quality and taking the lives of many people who were unable to safely evacuate.

Some of those people were disabled. Anthony Mitchell was a wheelchair user in Altadena who’s son Justin had cerebral palsy. With limited mobility, Anthony could not evacuate Justin on his own so he called for an ambulance. It never arrived.

They burned to death in their home.

I wrote about their deaths on social media, and people were quick to jump in to try and blame them. To ask why they didn’t prepare better, why their families didn’t help, why their neighbours didn’t check on them.

This is what we’ve been trained to do - blame the victims. Look for perceived failures in their behaviour instead of calling out the gross inequities that exist in society. Instead of confronting ableism head on and demanding that we take better care of our most vulnerable.

As it turns out, Anthony Mitchell had another son, Jordan, who was in the hospital during the fires. That’s why he was unable to help. He lost his father, brother and home and may be disabled himself. The last thing he needs is to read people on social media trying to find a way to blame him and his father for what happened.

If you’ve watched any of the footage from the fires, you’ve no doubt seen people literally running from their homes. Abandoning their vehicles and evacuating on foot. Leaving everything behind.

Many disabled people can’t do that. We have mobility issues that mean we can’t run, walk or drive. We rely on caregivers that we can’t leave without. We have medical equipment that keeps us alive and would need to evacuate with us. Medications that we can’t survive without.

Fleeing quickly would mean leaving all of that behind and likely dying in the days that follow from lack of necessary supplies and equipment. Even if we somehow survived the evacuation, we would endure catastrophic setbacks to our baseline. For some of us, that is an intolerable trade off.

Preppers often talk of ‘go bags’ for these type of events. They keep a bag of critical supplies handy so that if they ever have to flee, they will have what they need to keep going until they settle somewhere.

How can someone with complex chronic illness do this? If I’m leaving for a weekend away (which I can no longer do) my necessities would fill an entire car. I can’t survive on the contents of a bag.

That doesn’t mean we shouldn’t prep, it just means that we need our communities to recognize that we are at an inherent disadvantage in these situations and emergency preparedness needs to take that into consideration.

Anthony and Justin’s death is a tragedy, and it should spark a larger discussion about WHY disabled people aren’t prioritized in evacuations and emergencies. We’ve seen it time and time again.

During Hurricane Katrina, some of the sickest patients were left behind at Memorial Hospital and euthanized by staff. Deemed too difficult to move, their lives were prematurely ended. Where is the outrage?

In the early days of the Covid pandemic, the UK Government had a white board that said ‘Who Do We Not Save?’. They were preparing for the possibility that hospitals would be overrun and needed to decide what people would be left to die.

At the same time, Do Not Resuscitate orders were placed in the charts of learning disabled patients across the UK. Without their consent. They were clearly in the ‘who do we not save’ category.

There was minimal outrage at the time, and now it’s been largely forgotten. We’re seeing the rise of assisted dying policies that target disabled and low income individuals. Many of us are facing increased difficulty in accessing healthcare and community resources. Five years of ‘you do you’ Covid policies have fuelled a terrifying rise in eugenicist thinking.

Is it any surprise that we’re left behind during an emergency?

Where Do We Go From Here?

I don’t have the answers but I will be spending a lot of time thinking about a safety plan going forward, both for myself and the disabled community. It’s high time we started planning to protect the most vulnerable instead of leaving them behind as ‘acceptable losses.’

The Covid pandemic and climate change are creating untenable situations for disabled people. Many of us have been isolated for over five years, struggling to keep ourselves alive in a world that has deemed us ‘expendable’.

Let’s not forget, when the great unmasking occurred we were told that Covid was no longer a risk to ‘healthy’ people. Only the vulnerable need worry. As soon as the virus was seen as a problem only impacting people like me, society gave up trying to stop it. They ripped off their masks, stopped testing and isolating, and began callously ignoring record numbers of death and disability.

Those of us paying attention can see that this leads nowhere good. We are putting people into categories of worth based largely on their health status and perceived economic contribution, and leaving everyone else behind. You can’t turn away from nearly twenty million dead and 400 million disabled and expect to keep your moral compass intact. This isn’t how a society or community is meant to function.

As we see increasing severe weather events, we will also have to endure supply chain issues, medication shortages, mass evacuations and other downstream impacts that will disproportionately burden disabled people.

Will anyone care? Or will they wait until those issues impact them before they start demanding accountability?

This is where the canary analogy comes in. Being non-disabled doesn’t mean you won’t suffer the catastrophic impacts of Covid or climate change. It doesn’t mean that supply chain issues or medication shortages won’t cause you harm. It just means it will take longer before you feel the pain of these events. You have a buffer that people like me don’t.

That buffer is a gift.

You could use the time you have while you’re still safe, healthy and resilient to push for accountability. To demand more of our governments. To wear a mask. To say that you do not believe anyone should be expendable.

You can fight for disabled people to be not only included but centred in emergency discussions. You can recognize the inherent value in planning around us, because if our needs are considered then everyone will be better taken care of.

It is far easier to fight and survive when you still have your health, but health is never a guarantee. You can lose it in an instant. The sooner you join us in helping build more robust systems and protections, the better off your future self will be.

Until then, I ask that you spare a thought for all the people impacted by these wildfires in California. For everyone who’s lost a loved one to Covid, or who is now disabled by Long Covid. For all the disabled individuals who’ve had to spend five years feeling completely abandoned by society, friends, family and government. For the ‘others’ who are almost always forgotten.

Finally, it’s worth pointing out that Mask Blocs are doing incredible work in California right now. Many evacuation centres and government run facilities weren’t prepared with respirators or air purifiers - it’s the Covid conscious and disabled community supplying them. They’ve been boots on the ground since the fires broke out bringing N95s to anyone who needs them. They’re literally saving lives.

That’s what our community does - we show up for each other. We share and give to mutual aid. We believe in direct action. We help keep each other alive and supported.

There’s a bittersweet irony in the fact that those providing life saving assistance right now are among a group that’s been largely vilified by the non-disabled for years. Shunned for masking, taunted for their outreach and abandoned by many friends and family who wanted to ‘forget about Covid.’

Despite how badly many Covid advocates have been treated, they still showed up. They’re leading by example and doing the work the government should be doing but aren’t.

Let’s take their example and apply it wherever we can. Let’s keep showing up for one another. Let’s start making plans to keep ourselves safe during disasters and find ways we can build community support to ensure our most vulnerable are protected.

We can and should continue demanding that the government do more to assist the disabled and vulnerable, but I believe we’re at a tipping point right now. Disasters are happening more frequently and we may be on the cusp of another pandemic as H5N1 seems determined to make the leap to humans.

It’s time we realize that no one is coming to save us and start figuring out how we can save each other. Start brainstorming the ‘mask bloc’ equivalent of emergency planning for disabled individuals. I know we can do it if we work together.

Do you have an emergency plan? Would you be able to safely evacuate if you needed to? Have you ever been in a situation where your health or disabilities put you in harm’s way?

I’m debating turning this article into a series about emergency preparedness for the disability community. If this would be helpful, or if you have tips you would like to share, please leave a comment below or send me a message!