It took me over a decade to realize I was disabled

Internalized ableism is no joke. It can lead us to push our bodies & deny our reality

🧵 about ableism, disability, covid caution and finding your voice

We aren’t expendable. Activism is more important now than ever before /1 I was a sickly child my whole life - but we didn’t discover the reasons until I turned 30. It was validating to finally have answers. A name for my conditions, explanations for why I never felt well & why my body couldn’t do what other people could. /2

Me at ER for cardiac issues

Dr: “Could you be pregnant?”

Me: “No I had a hysterectomy”

Dr: “You look too young for that? Are you sure?”

Me: “I’m confident”

Dr: “I think you might be confused. Maybe it was your appendix.”

Proceeds to order pregnancy test /1 🧵 I’ve had this interaction more times than I can count

Healthcare workers think I’m “too young” to have had a hysterectomy and automatically assume I’m confusing my womb with another organ.

They ask endless questions, only to end up doing a pregnancy test anyways /2

Today marks the five year anniversary of Covid being declared a pandemic. Some things I want people to remember:

The threat is not gone. People are still dying and becoming disabled every single day

COVID is airborne. It’s always been airborne. 🧵 Droplet transmission was pushed incorrectly & then doubled down on for economic reasons. If governments admit it’s airborne, they have to spend money upgrading air quality and providing respirators etc.

The only way to avoid Long Covid is to not get Covid.
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I’ve got a loved one in remission from cancer who doesn’t understand they’re high risk for Covid. They don’t mask.

They’ve had 3 infections & are sick of being sick.

At a recent hospital visit - they were FINALLY open to reconsidering masking & wore provided surgical mask 🧵/1 This was a major step for my relative - it showed that their heart & mind were open to reconsidering their position on masking. Prior to this they were in denial - often saying they never want to think about covid or masks again. /2

As more States propose mask bans, I want to take a moment to discuss claims that it’s “fear mongering” to say that masking is illegal

People claim the medical exemption is “good enough”.

This ignores 3 critical points. Public perception, anti mask sentiment & rampant ableism 🧵 First things first, mask bans make masking a criminal offence. They make the act of wearing a mask illegal

there may be medical exemptions, but they’re incredibly problematic

Lawmakers specifically chose not to exempt medical masks & respirators. The burden is on the wearer /2

Disability is the only minority group you can join at any time. No one asks for it or expects it, it just happens

It’s not a moral failing. You didn’t deserve it. Most people will experience disability at some point in their lives

So why do we treat disabled people so badly? 🧵 Why do we make them grovel and beg for the most basic amount of help? Why are they so often abandoned by friends and family? Why are they forced to remain in abusive relationships because they’ve been stripped of their autonomy? /2

“You’re so lucky you don’t have to work!”

Disability IS a full time job. Only you don’t get paid. You don’t have opportunity for advancement. You never get to earn more money.

You spend every dime trying to stay alive. You live below the poverty line. You’re judged constantly. I wish non disabled people would imagine how it feels to have your life grind to a halt with no hope of improvement

When you’re healthy, you have the possibility of earning more money. Of getting a better job. Of inheriting. Of moving forward

That vanishes with disability /2

When you’re chronically ill, your baseline is everything.

Our energy (or “spoons”) have to be carefully rationed to avoid catastrophic setbacks.

Unfortunately, even when you plan things perfectly, it only takes one thing going wrong to throw your body into a tailspin 🧵 I spent the last week working on an article about how to manage spoons when using social media. I was inspired to write it after realizing that I had been in a flare since Jan 20th.

The neverending negative news cycle was literally making me sick. /2

As Canada and the U.S. enter a trade war after spending decades as friends, neighbours and allies … I want to tell everyone a story about 9/11

Years ago I was asked to go to a Canadian college to see a workshop for a musical about 9/11.

I scoffed. A musical about what now? 🧵 I drove out to the campus during a brutal winter snowstorm. I remember cursing that I was having to deal with a late night white knuckle drive for a musical that made absolutely no sense.

Who would want to listen to people sing about that unspeakable tragedy? /2

If I could help non disabled people understand one thing about being disabled, it would be how important maintaining a baseline is

When you’re chronically ill, baseline is everything.

Minor setbacks can be catastrophic, so we have to do a risk analysis before ANY activity 🧵 If you’re asking a disabled person to use valuable spoons… be prepared to hear “No”.

It’s not because they’re rude or they don’t like you or they’re “not trying enough”.

It’s because they know their body and they’ve assessed the risk of a setback to be too high. /2

Disabled people have been trying to warn the public for years that “you do you” Covid policies were leading to increased discrimination and eugenics attitudes. 

When States began criminalizing masks, we pleaded for support. We asked our peers to wear a mask in solidarity. 🧵 When healthcare facilities dropped masking, we called out the 10% fatality rate of hospital acquired COVID. We again asked for support. We begged people not to view us as expendable.

What did we hear in response?? /2

Tomorrow will be a dark day for many.

For disabled, marginalized, LGBTQ+ folks & women. For anyone who still cares about others

The disability community saw this coming. It’s important we listen & understand that labelling people as expendable for 5 years leads nowhere good 🧵 Since November we’ve watched hate win over and over again.

We’ve witnessed the emboldening of those who think they’re superior to others.

We’ve seen an increase in misogyny, bigotry, ableism, racism & discrimination. /2

When it comes to air quality, I’m a quintessential canary in the coal mine.

Thanks to my severe MCAS, I notice changes in the air that are imperceptible to others.

I’ve learned a few things over the years to keep myself safe. They might be beneficial to folks in LA 🧵 First things first, if you’re not familiar with MCAS it stands for mast cell activation syndrome.

Mast cells are an immune cell that contain hundreds of mediators. They release things like histamine in response to a trigger, causing an allergic reaction. /2

There’s a lot of ghouls saying David Lynch “deserved” emphysema because he was a smoker

No one deserves disability. We’ll almost ALL experience it at some point in our lives. Health is not guaranteed

Smoking is incredibly hard to quit and he did it. He gets props for that. 🧵 The bigger issue here is that once again we have ableists showing us how much disdain they have for anyone with a disability.

Even when we die, they must find a way to blame us instead of considering whether their behaviour may have made life harder for us. /2

There’s a disappointing amount of victim blaming by the “not all men” crowd.

They are unwilling or unable to accept that we are trying to tell them we know it’s not all men - but we can’t tell the difference.

Are there sometimes red flags? Of course. Always? Not a chance 🧵 First of all - many rapes occur within a person’s own family and before they’re even an adult. They literally don’t have the chance to date, get to know men or learn what a red flag is before they’re sexually assaulted.
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A doctor posted earlier that she saved a life because she believed her patient.

She described him as “strong”, a father, a firefighter. Someone who wouldn’t complain for no reason.

How can HCWs not realize this bias insinuates others DO complain for no reason? 🧵 I’m glad the man got the care he needed - as he had a life threatening issue that could have easily been blown off.

But what if it had been someone else? A disabled or marginalized women? Someone who’s homeless, has multiple complex illnesses or dealing with drug addiction? /2

Our “pull yourself up by your bootstraps” capitalist society looks down on disabled people

A person’s value is measured by their health, job & their economic contribution.

Our worth is defined by how much we make for the “system”.

Not able to “produce”? Your worth plummets 🧵 Need to rely on others to have your basic needs met? You’re a burden.

Depending on government assistance? You’re a “useless eater” who will be kept below the poverty line begging for whatever meagre assistance you can get.

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A few years ago I caved and bought a cheap Robo vacuum.

I had resisted for years - scolding myself with gaslighting comments like “your condo is so small - you SHOULD be able to vacuum yourself”

I was so mean to myself that I refused an accommodation tool that would help me 🧵 This is a common experience for disabled people. We often struggle to ask for the help we need. We feel bad about requiring assistive devices or items that will make life easier.

We see them as a “frill” because other people have taught us we don’t “deserve” them /2

I can’t stop thinking about the Canadian politician who became disabled at 60 and ended up homeless

Other politicians came together to raise over 40k in less than 48 hours … because they KNOW you can’t survive on government assistance.

So why aren’t we changing policies? 🧵/1 To be clear, I don’t begrudge the man help. I’m glad he will have the chance to become housed and feel supported and cared for.

But government salaries are well above the minimum wage. Their disability payments are likely more generous as well.

He was almost retirement age /2

Everyone remember Brian - who felt he was aggrieved because people on his flight to Florida were in wheelchairs yet able to board plane without assistance?

Brian felt it appropriate to photograph them & complain to the airline.

What’s worse, the airline pandered to him. /1 🧵

Brian’s complaint? It’s unfair people get to use wheelchairs when they can walk. He’s mad they get to pre-board

He doesn’t understand dynamic disability. He can’t comprehend the reasons a person might require a wheelchair to navigate an airport but be able to board unassisted /2

When you become disabled - you don’t just lose your health. You lose your autonomy, independence, freedom and often … your friends & family.

Help doesn’t magically arrive. No one comes to save you.

In fact - most people will blame and abandon you. 🧵 I don’t say this for pity or to scare people - but to shine light on something we don’t talk about enough.

You can lose everything when you become disabled.

There are folks who act like it’s a vacation - like it’s somehow “fun” for us /2