“Stop being a burden.”

This is something almost all disabled people hear. We need help to survive - but when we accept help - we’re chastised for unfairly burdening friends & family.

I was told to find a care home & stop bothering others.

I issued this person a challenge🧵 /1 I told them that I had looked for a suitable care home many times - and I’ve come up empty because people like me fall through the cracks.

If you’re relatively young & somewhat stable - you aren’t considered when care homes are being established. /2

I’m shocked by how misinformed the men in my life are on abortion bans. Most of them support a woman’s right to choose - but they don’t understand that bans put lives at risk. One said to me “I’m sure they don’t impact women who WANT to start a family”.

They do - here’s why 🧵 Abortion bans put lives at risk. When you criminalize abortion - you’re criminalizing pregnancy.

It sounds harsh - but women have been arrested for having miscarriages. Doctors face jail time for intervening to save a woman’s life if she’s having pregnancy complication /2

A few weeks ago I posted a self deprecating thread about a thumb injury.

Joke was on me - because it was less ridiculous & more serious than I realized.

It served as a reminder of the importance of a well stocked first aid kit - especially if you’re housebound & disabled 🧵/1 When you’re housebound - especially if you live alone - you can’t just pop to the store if you need supplies. You’re stuck relying on friends & family who may have limited availability - or punishingly expensive delivery services with woeful customer service. /2

Him: “It’s cute you think you know things but don’t EVER talk to me about politics again missy.”

Me: “Don’t speak to me that way it’s not appropriate”

Him: “You used to be intelligent - you’re a disgrace & need to learn more respect for men”

🧵 on rising misogyny & ableism /1 I’m having a tough time with this one. This person had a special place in my heart. I considered them an ally - someone I could always count on.

There were a few warning signs that his behaviour was shifting and he was becoming less tolerant - but nothing prepared me for this /2

Some folks are saying that any Trump supporter needs to be excised from one’s life - and while I don’t disagree - I’m fearful for disabled people who have no say in WHO they rely on.

Many of us need help with activities of daily living. Our survival depends on others 🧵 Unfortunately- we are often left in the hands of abusive or toxic people who treat us badly.

Who hold our disabilities over us and demand we grovel to them in exchange for the “help” they provide.
/2

It’s come to my attention that some disabled & chronically ill patients are being shamed or criticized for leaving this place

Can we collectively take a breath & agree not to turn on one another?

Most disability advocates are sick themselves - shame & stress cause harm 🧵/1 Personally - I’m struggling to stay here. I don’t want to be here anymore. It’s become too toxic and the majority of my engagements are threats, slurs, insults or bots.

It takes a tremendous amount of spoons to sift through them to try and get to the genuine ones /2

There’s a teenager in the ICU in BC with bird flu.

As news spreads- I’m seeing increasing number of people ask “what health conditions did he have? Was he overweight?”

Can we PLEASE not do this again? A 16 year old is fighting for his life. Stop looking for fault /1 🧵 Just like with Covid - people are trying to tell themselves there must be “something wrong” with that individual to make them more vulnerable.

They must be in the “other” category. They’re “expendable.”

It needs to stop. /2

“If somebody doesn't help me, I'm going to die," she recalls wailing, watching doctors and nurses pass her by.

"Somebody said to me, 'I don't know what you expect me to do,'" she said. "'You're a healthy 21-year-old young female.'"

This is exactly what happened to me at 24… 🧵 This happens far too often. Some of the most dangerous words in medicine are:

“You test results are normal”
“You’re young and healthy”
“What do you want me to do?”

I heard these words over and over while dealing with a severe internal bleed after a hysterectomy /2

In May I wrote an article about how rising ableist and eugenicist beliefs - combined with discriminatory mask bans - were leading us to a very dangerous place.

I expressed my fear that others seemed willing to embrace fascist laws just to “punish” the disabled. 🧵/1 Now here we are six months later - and things are playing out exactly how myself and many disabled and marginalized individuals feared.

We’re facing the potential devastation of healthcare, education and climate organizations in the U.S. More mask bans. More discrimination /2

Whenever I hear a new detail in the Gisele Pelicot case I’m further horrified.

Imagine thinking you’re in a loving marriage - and suddenly finding out your husband has been inviting men to assault you while you’re unconscious?

It only gets worse from there /1 🧵 Not only was her husband drugging her and soliciting men to assault her - he was downplaying her concerns about her memory loss and convinced her she was experiencing early onset Alzheimer’s or Dementia. /2

People spend their lives running from suffering. Doing whatever they can to avoid feeling pain. The idea of forever suffering is terrifying to them.

I think it drives a lot of the disdain for disabled people. We remind them that suffering is permanent. That it can’t be outrun. We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”

And that scares the crap out of people.

/2

A few weeks ago - I had a sudden and severe MCAS reaction that landed me in hospital.

I had just washed my hair (which can be a trigger) and was trying to eat dinner when it happened.

I assumed it was the food - so stopped eating & went to lay down.

I was very wrong 🧵/1 Food - even safe food - is often a trigger for me. My “bucket” is full all the time because my MCAS is out of control in summer and fall.

If I do something that requires exertion - like washing my hair - it will generally mean I’m more reactive for the next 24-48 hours /2

“Your test results are normal”

“You don’t look that sick”

“What do you want ME to do about it?”

Healthcare workers - there’s a myriad of conditions that are quite serious and debilitating but will have “normal” test results.

So what DO we want you to do? 🧵/1 We want you to listen to us. Believe us when we tell you something is wrong. Trust us that we are the experts in our own body - and we aren’t coming to you for “fun”

We’re coming to you because we can’t fix ourselves - we need your help. /2

If you’re dealing with a COVID infection - remember it’s NOT your fault.

Those of us trying to avoid COVID & break chains of transmission have been failed by governments & public health. We’ve been left by the wayside.

It’s hard to avoid when NO ONE else is even trying. /1 🧵 I’m always sad when I see people blaming others for getting covid (or worse - blaming themselves).

There’s only so much a single person can do when covid is everywhere and most people refuse to acknowledge it (let alone mask or stay home) /2

When I was first diagnosed with MCAS I thought “a condition I can control!”

I genuinely believed that since there were clear & obvious triggers - I could put in the work, overhaul my life and be free of attacks.

When a patient plans - mast cells laugh 🧵/1 I threw myself into research trying to learn how to adopt a low histamine diet, clean my air and change my body care and cleaning products.

I (falsely) assumed that if I made enough changes - sacrificed HARD enough - I wouldn’t have to deal with flare ups. /2

A progressive male “friend” recently told me that he “only wants to date virgins” from now on. He’s 42.

I asked why - since he never cared in the past.

He said that “women are becoming too loose and it’s eroding family values. They should get married & procreate sooner” 🧵/1 I was shocked. This “friend” never even wanted marriage and children. He wasn’t conservative and balked at traditional family values.

Now he’s telling me that women need to get married younger so they don’t have the “chance” to become “loose.” /2

The early days of the pandemic were scary for everyone - but for many disabled people there were also rays of hope.

We saw the world become more inclusive seemingly overnight - providing services like telemedicine & remote work - which we had spent years begging for. 🧵/1 I also had hope that we were finally going to make real progress on chronic illness. That Long Covid would be “too big to ignore.”

That we would start being proactive with our health and work towards keeping people healthy and really HELPING those who were chronically ill. /2

Misogyny in medicine is focusing more on what a man might WANT than what a woman NEEDS.

I NEEDED a hysterectomy and was told I wouldn’t survive pregnancy.

“Informed consent” for surgery looked like this:

“Don’t you want to be a Mom?”
“You may want BIOLOGICAL children”
/1 🧵 “What if you meet a man who wants babies?”

“What if he leaves you because you can’t bear his children?”

“Men went their OWN babies - what if you can’t do that?”

“You will feel like less of a woman.”

/2

Many disabled and chronically ill people find themselves labeled “difficult” or “non compliant” simply because they’re advocating for what they need.

Some examples:

😷 you request staff wear a mask

🧵/1 😷 You decline to remove your mask (ie for oral temperature check that could be performed other ways)

😷 You decline a specific drug and/or treatment because you know it will harm you (example - fluoroquinolones are contradicted for EDS patients and not all doctors know this) /2

What happened to curiosity in medicine? Did it ever really exist?

A 🧵 contrasting two doctors appointments - one with a doctor willing to work collaboratively, listen and ask questions - the other lacking in curiosity and only interested in doing things “by the book.” /1 The first appt was for a strange infection that wasn’t responding to treatment.

Dr: “Have you been tested for HIV?”

Me: “It was negative.”

Dr: “You sure? Let’s test again.” It comes back negative again.

“That’s weird. Oh well. Best of luck.” /2

I remain stunned by how few men I see speaking out about Gisele Pelicot.

We NEED you to condemn this behaviour. To hold your fellow men responsible.

Too many men participated in these atrocities & what’s galling is of the men who declined … no one sought help /1 🧵 Not one of them went to the police - or even to Gisele herself - to let them know a woman was being repeatedly drugged, raped and assaulted and her HUSBAND was arranging it.
/2