‘We’re in this Together’ until We’re Not

The Fires

It’s the middle of the day. I’m sitting by the window and it’s barely brighter than daybreak or sunset. The light is a deep orange and the air outside is thick with haze. M just sent me a photo on his way out to pick up another air filter from his Mum’s (she’s away, staying in the interior of BC). The car is covered in a layer of ash.

We’re hundreds of miles away from most of the large wildfires in Washington and Oregon states. A couple of years ago it was BC that was on fire and the weather transported BC’s smoke to the south. For the past 5–6 years everyone in the PNW has been feeling the impacts of forest fire expansions across the board. Last year was a small lull. This year, in the matter of two weeks the entire west coast is on fire at once. Looking at the heat, smoke, and fire maps this morning I see it’s not limited to North America and central South America is suffering too.

Since BC’s fires have stayed relatively under control this year I wasn’t sure we’d see smoke but around 3–4 days ago it rolled in. At first it just smelled like burning wood; the thick smoke that smells bad and makes it hard to breathe in a very obvious way. For about half a day it felt like it got better. Well, from within my four quarantine walls. I was mistaken. The fine particulates were building up and I had felt very unwell for a couple of days. Headaches, existing heart conditions acting up, eyes burning despite eyedrops, and eventually a sore throat.

Yesterday and today have been particularly bad. By tonight our air quality rating will have sat consistently at 10+ (the highest rating on the Canadian AQHI) for two days. It’s forecast to last for another 2–3. These things are hard to predict.

Any other year this would have been difficult on its own. I’ve been here before and I was sicker then. As a disabled person I adapt very quickly to situations that threaten my health. But, I’m sitting here looking out of my window at the giant apartment complex that overshadows our little brick building and nearly every one of my neighbours has their windows open. Several even have their doors completely open. It is a heatwave after all (in mid September), but 10+ on the AQHI is dangerous to everyone; not just people like me.

I’m sitting indoors with a filter mask on, all my windows as tightly shut as they can and it’s just one more thing in the COVID-19 pandemic that brings a pang of emotional pain and fear. My situation is so different to most people’s. When your health isn’t precarious, as mine is, you can take more risks, you don’t have to be as vigilant about the news or the environment and you can live your life more fully.

The Pandemic

This has always been true. The pandemic didn’t create that reality, it just heightened it. Back in March, for a brief moment, it felt different in a way. A small beat in time when the lockdowns began where “we’re all in this together” was true in a small way (however, we must recognize the risk ‘essential workers’ and socially vulnerable people were put in).

In BC, it seemed like this was every politician’s motto. Dr Bonnie Henry’s motto was also “Be Kind, Be Calm, Be Safe”. She’s our Provincial Health Officer and has been celebrated for her calm, friendly approach, as well as the success of her team and our government early on. She’s been careful to explain we also experienced a lot of luck, but she’s clearly competent. For a brief moment, despite the fact that Henry or Adrien Dix (our Minister of Health) wouldn’t outright spell out who the ‘most vulnerable’ are — outside of ‘our elders’ — I did feel like we were in it together, and perhaps things would be kind and calm.

As lots of people dealt with the crisis of being locked in their homes for the first times in their life I felt like a seasoned pro. Over the years I’ve experienced disability and health conditions that left me house bound or in hospital. I lost a lot of friends and found myself incredibly isolated with very little in-person contact or socializing. I’d been working at getting that back for a couple of years when the pandemic hit.

I was supposed to move across the country to Montréal on March 30th. About half way through March we realized that would be a bad idea given I’m also very high risk of complications from the then new virus. Looking back we knew so little, but something in my gut told me it was terribly unsafe. The more we’ve learned the clearer it’s become from a biological and health stand point that I am very much high risk. We made the right decision and I started a new job thousands of miles away from my co-workers. I’ve been inside my home pretty much most of the time since March. I’m exhausted, lonely. It’s gotten harder to reach out.

And, I’m afraid for winter.

The ‘New Normal’ is for Them not Us

There’s something I can’t get out of my mind today. I read an interview with Dr Bonnie Henry that she gave this week. It was right before she and others from our government announced thier autumn/winter plans for the management of the pandemic in BC. But, first, context — back in May, when I started to venture outside for fresh air, walks, the odd visit to a park, to sit curbside and enjoy coffee from my friends’ roastery, I spoke to M of my fears for the summer. It came down to this:

BC’s numbers fell very quickly thanks to strict lockdown. They stayed very low for a long time. Reopening was announced and started at the end of May. I knew in my heart one thing — we would have a surge of cases in late summer. I deeply hoped I was wrong, but I see patterns in data, statistics, people’s behaviour, and social systems with relative ease.

I’d been keeping up with as much as I could from across the wrold and I felt like reopening along with the unusually low numbers relative to the rest of Canada/the US would mean either we’d get an influx of visitors taking their holidays here (because ‘it’s safe’), or locals would take many more local holidays. One thing I didn’t forsee was the impact of bars and nightclubs because I didn’t realise they were included in reopening.

In mid June I started going out once every Sunday morning to visit my friend’s coffee roastery. As an autistic person routine is extremely important to my ability to function, let alone my mental health (it is good for everyone). So, we maintained our Sunday routine with strict safety measures in place, and I trusted my friends who ran the tiny roastery.

A few times we took a drive just so I could see the world. Every time it felt like everyone had almost gone back to ‘normal’ while I was still locked down, for my safety. The things Henry and Dix have promoted all summer is ‘assessing your own risk’, ‘limiting your bubble’, ‘keeping your distance where possible’, ‘gather outside if you must’. These are all fairly smart and make sense, but still there was very little acknowledgement of who our most vulnerable are and what we look like.

Parks became too crowded, walking down a sidewalk I didn’t feel like people were respecting social distancing in line-ups or at crosswalks, even a short walk at the beach I was over-run with unmasked kids and their parents. I didn’t feel safe anywhere, yet restaurants and brew halls were full (50% capacity), outdoors lifestyle shops had lines around the block, people were working on laptops inside cafés, the brand new patios that were newly approved everywhere were full (and not wheelchair accessible), only what seemed like 50% of people were wearing masks, even indoors, sometimes less. (We still don’t have a mask mandate in BC — it’s one thing Dr. Henry doesn’t want to do that I can’t help but feel put at risk over).

Infection numbers gradually started to climb and I locked down again. It had been only 4 weeks since begining to venture out once a week. From inside my home I watched neighbours have groups of friends and family over. From one day to the next it was different groups of people in the same apartment. A clear misunderstanding of how to safely expand social bubbles. My mind is too good at patterns and I’d watch my neighbours and immediately picture the complex web of overlap of all those contacts. People skipping from home to home, café, bar, restaurant, offices, to crowded beaches. It’s endless.

It was happening again. I’ve been through this — existing on a different plane of society to everyone around me. It’s surreal, a twilight zone. Most importantly it causes a particular kind of hurt, trauma, heartache; one I don’t think I ever fully healed from before. I feel utterly invisible, like an alien. I’ve been merely an observer to human life for nearly 1/3 of my lifetime.

I know I’m not alone. There are so many others like me. I know many on social media in this situation, spread across the globe. There’s plenty of people in this city too. The terrible thing about isolation of this kind is that even if we know that, we can’t feel it. I have been here. It’s not the same as when I was house bound due to my health, but it is close. Everyone is living through the pandemic, but it hasn’t felt like ‘we’re in this together’ for months now.

I still have hand painted signs in my window thanking people people for staying home for people like me, but I’m not sure how to feel it anymore. I painted them and stuck them up in the first week of April. I spotted one neighbour rolling her eyes at my signs while she enthusiastically “cheered for healthcare workers” at 7pm on her balcony, her partner whooping obnoxiously and their dog barking at their feet.

The Parties

For weeks there were many parties around my neighbourhood. They were especially bad on hockey nights. They kept me awake with the noise and the anxiety they caused me.

People out there living their lives. It’s all fine as long as people like me, the vulnerable, stay locked away. In the early days of this disaster the ever clanging bell of social media responses to deaths of younger people was “but what were their pre-existing conditions?”. It’s probably still ringing, I just stopped looking.

According to the behaviour of too many: it’s our own fault that we have existing health conditions that make COVID-19 a threat. Let’s not forget we’re also ‘only 2%’. I will forever be scarred seeing thousands of respected, popular, sometimes even smart people online saying ‘98% of people survive!’. The problem is, people are bad at numbers; especially percentages. They also have no concept of what mere ‘survival’ can look like in the light of day. Perhaps, they’ve never had to just simply ‘survive’?

This is nothing new, but the pandemic exposes these biases and oppressions under shiny new headlights. No longer are people thinking these things so quietly about us, ‘the vulnerable’.

The quiet part is loud. Just like those parties.

Left Behind

In part this is on our communities, the people, society, but it’s also on our leaders. I do admire Dr. Henry and Adrien Dix. I can’t imagine doing their job in this — the constant benefit/risk equations, trying to know when and how is the right time to share information and data, what to keep from people who will only misunderstand, and worst of all, having so many lives at risk on their and their team’s shoulders. They know people will die and others will be left with disability, health conditions, and shortened life expectancy. They can’t change it, but they have to do their best to keep that number as low as possible. I can’t even fathom it. Still, as vulnerable person, I do feel let down.

In the interview this week, Dr. Henry admitted that her team knew a spike would happen at the end of the summer, but it was necessary. She said that people needed to be able to blow off steam for their mental health so that they can go into autumn and winter with some level of renewal and hopefully restrictions will be more likely to be understood, followed, and we can minimize the impact of ‘Respiratory Illness Season’ on both people and our healthcare systems. But, what about us? The Vulnerable. Where does our mental health stand?

It’s been nearly seven months and I still don’t think we’ve been made visible. It hasn’t felt like our well being has been taken into account beyond keeping us alive. We’ve always been this Other entity, but now more than ever. We’re constantly referred to in a practical mumble along with ‘our elders’. This, too, isn’t new. The disability community is used to being lumped in with the aging population, while at the same time we’re kept distinct because aging people are not like us; they’re not disabled. We are Othered in every sense, at every turn; even during a pandemic where we’re all supposed to ‘be in this together’.

Our steeply rising COVID-19 numbers started in July. It’s now mid-september and they’re still rising. We’re burried in the orange glow of the worst US fire season on record. I am wearing a mask, my lungs are on fire, my eyes burn, it is so warm sweat is dripping down my forehead. I’m locked up inside like I have been since March.

Last weekend, despite the all time high COVID-19 numbers, I knew I needed to get out, so we went to the forest for the first time in about 6 weeks, just the second since March. Despite loving city life I can’t survive without nature — it’s what centres me and keeps me whole.

Nature makes it possible for me to do my difficult job as an accessibility specialist and designer in games where every day I must educate, advocate, and work with systems that weren’t built with my role in mind. I regularly have to address stigma or bias, carve a path, and I have a lot of growing responsibility. It’s OK, I put myself here and asked for it. I love my job most days, but it is hard, stressful, and exhausting. I must do it from across the country to my co-workers and peers. Sometimes it’s across the world. A tug of war with timezones.

Nature makes me feel like my skin can breathe. It’s where my soul belongs, I’m sure of it. When I was an artist its imagery consumed my work.

I’ve never felt as deprived of that part of me as I have this year. I’ve withdrawn from friends, co-workers, the world. I feel like if the world doesn’t want to acknowledge I, and people like me, exist? Maybe I won’t. That sounds very dramatic, and it’s not quite like that. I’m just exhausted, lonely, and burned out on being locked in and isolated. I’m still healing the trauma of this being a big part of my disabled life.

This is everything Dr. Henry said they were trying to avoid this summer — they wanted to give ‘everyone’ a good summer with things reopened (‘safely’) to ‘blow off steam’. But, it’s not really everyone is it?

Privilege

Here’s a thing I must acknowledge: my privilege. It’s a privilege to be able to lock down, isolate and avoid the risks. Too many people don’t have that choice. They must go to their jobs in the service industry, the healthcare system, industrial plants. Many of those people are ‘the vulnerable’ too. I also now understand lockdowns are oppressive and harm those most marginalized. As the numbers first spiked I was confused and hurt that our government wouldn’t roll back the reopening phases.

So, I sought answers and found them. There’s a lot of very good and smart people out there who work in the healthcare and social sectors — they already know that lockdowns disproportionately benefit the privileged while they hurt the marginalized. It was obvious once I saw it spelled out. The more I read their twitter conversations, papers, articles, I recognized that many of us lack a deeper understanding of the impacts of this pandemic on our communities.

Today, I understand why outbreaks must be risked in order to balance kids being able to go to school, so parents can work, so those who are vulnerable in more ways than their health can be supported and as little havoc is wreaked on as few lives as possible. When lockdowns happen kids must stay home, parents can’t work, ‘essential workers’ who are disproportionately marginalized, poor, and BIPOC are the ones put at risk so those of us privileged enough to work from home and have a nice income can stay safe. That’s obviously absolutely dystopian in the worst way.

So, the real work by the health sector is in prevention (social distancing, business rules etc.) and controlling outbreaks in tracing with a lot of social work to get those exposed to self isolate. The whole point of getting through any wider crisis like a pandemic is that we all make sacrifices and do our part. That doesn’t make it easy, and it doesn’t mean there aren’t things that could be handled better.

The odd thing about privilege is that sometimes it’s not clear cut. What’s a privilege in one axis can be oppressive in another. I’m fortunate I can self isolate, keep myself safe. I have a partner that can go to the store for me. I can work from home. The fact I can even do my job from across the country wasn’t something we were sure would be possible back in March.

Still, I can’t help but think of those of us who didn’t get to run all over this summer; ‘blowing off steam’. Everyone else got to have a summer — seeing friends, visiting extended family, going camping, hanging out in overflowing parks and beaches, sitting in coffee shops, eating in restaurants, enjoying those inaccessible patios, and some even went drinking and partying in bars, nightclubs, and homes.

The Vulnerable

Most people have no idea who we are or what we look like; ‘the vulnerable’. My second visit to the forest last weekend the trail was busy. There were giant blue and yellow signs asking people to remember to keep 2m apart from those outside their bubble. Most people were good about this, but there was one group — perhaps in their early 20s — who gave us no space and crowded us. This happened on my previous nature visit too. I am, again, privileged that I could go visit nature even twice since March and there are many less able to do so.

No-one knows who ‘the vulnerable’ are outside of their ‘elders’. I was using crutches and my disabilities aren’t that invisible but I don’t look ‘sick’ anymore to a briefly passing eye — despite one of my ‘pre-existing conditions’ acting up on the walk.

One day we’re invisible, ‘the vulnerable’, the next, we may die young from COVID-19 and there would be people yelling on social media ‘what were their pre-existing conditions?’. As if being disabled, or sick, is a personal failing. To put it another way: one day we are to be protected, the next we are an acceptable cost.

This is the fundamental flaw in the messages being delivered about us and how this has played out. The message is ‘protect the vulnerable’ but in reality the vulnerable must protect ourselves, and if we don’t? Well, what were their conditions?

There was an opportunity in here for our health officers and ministers to educate what ‘pre-existing conditions’ are, what they look like, what causes them, who has them, and how it’s simply, just human beings of all ages. We are everywhere and you wouldn’t even know.

I’ve been isolated for months (I’m buring out) and winter is around the corner. My mental health has faltered. What happens over the next 4–6 months? Maybe if our leaders had spelled out who the vulnerable are and how we might be protected, but more importantly, included, there would have been better risk management. Maybe us ‘vulnerable’ could have blown off a little steam this summer too? Then again, maybe not.

I was going to try and get some more outside time this weekend. The planet had other ideas. Yet, all my neighbours have their windows and doors wide open while our city sits comfortably in the top 5 cities with worst air quality in the world.