#tinu

By Broadwaybabyto AKA The Disabled Ginger

If you see a mask - wear a mask. Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.

I’m dedicating this article to disability advocate and Long Covid patient Tinu - who passed away three weeks ago. Please read to the end for more information on her legacy and how to help patients like her. #ForTinu.

I was recently at the hospital (which is not an unusual occurrence for me) and wearing my N99 respirator like I always do. I’m the definition of a ‘high risk’ patient. I’m immune compromised, I don’t mount a proper response to vaccination and I have heart issues. A cold has put me in the hospital.

In fact - I masked prior to Covid during cold and flu season or in high risk situations like the ER. Healthcare workers intuitively put on a mask when they saw mine - a process we refer to as ‘mask mirroring.’ They recognized the risk any virus or bug posed to me and took steps to try and keep me safe.

During the first year or so of the pandemic - it was relatively easy to stay safe in the hospital. There were strict mask mandates in place (albeit with surgical masks) and many patients were being treated virtually to reduce the number of people in the hospital.

But as we rushed ‘back to normal’ - I noticed a perceptible shift in healthcare workers’ approach to masking. They very clearly didn’t WANT to do it anymore. Even in hospitals that had active mandates - I would encounter staff wearing their mask below their nose or chin - and they would sigh and huff at me if I asked them to put their mask on properly.

One time I was in the elevator when a woman in scrubs got on. She was wearing a hospital badge - clearly an employee and thus governed by the mandates the hospital had laid out.

Her mask was in her hand. I asked politely for her to wear it and told her I was immune compromised. She rolled her eyes - held it in front of her face (without actually putting it on) and then leaned right across me to hit the elevator button. There was another set of buttons on the opposite side of the elevator - and this move felt like a deliberate attempt to violate my personal space and ensure I knew just how unhappy she was that I asked her to mask (trust me - I knew).

As time went on and more and more people bought into the comfortable lie that Covid was over - it became harder to access safe medical care. Less and less staff were complying with mandates - and eventually they were dropped altogether in favour of a ‘mask friendly’ policy.

What exactly IS a ‘Mask Friendly’ Policy? “We respect the choice of all patients to wear a mask if they see fit. Hospital staff will decide whether or not a mask is required based on a number of factors. They will not tolerate any violence or abusive behaviour.”

Effectively - we’re not going to mask anymore but if you really want to - we won’t stop you. Stating that masks will be ‘respected’ infers that there’s something inherently wrong with masking. That people who do it are to be tolerated but perhaps also pitied. It’s the exact WRONG message to be sending in a hospital of all places.

That said - I knew my chart clearly documented my risk factors so I hoped that doctors would continue to ‘mask mirror’ for me. Unfortunately I was very wrong.

Since mandates have been dropped I’ve been accused of being “anxious”, scared of Covid, “difficult” and told I should “stop worrying so much.” I’ve had staff refuse to pull up a mask they’re wearing under their nose, repeatedly take their mask off and on during an appointment and a few have outright refused to wear one. It’s been absolutely exhausting - as I have to steel myself for each and every interaction as though I were going into battle.

For a Vulnerable Patient - the Hospital Feels like The Hunger Games May the odds be ever in your favour. We have to navigate so much risk. It’s not JUST the risk of Covid - it’s any hospital acquired infection. The pushback against mandates has caused an overall reduction in infection control. I’ve had staff try and start an IV without washing their hands - and get angry with ME for requesting they stop. It’s bleak for patients right now.

There’s also the risk of being psychologized or labelled anxious because you choose to wear a mask (or ask a healthcare worker to wear one for you). I don’t understand how we’ve ended up in a place where it’s considered ‘weak’ or a ‘flaw’ to want to protect yourself and others from a deadly and disabling virus. But it IS where we’ve ended up.

On one of my recent trips to the ER - I had an infuriating interaction with a doctor. It may not seem immediately obvious WHY it was so infuriating - but please read on and I will explain.

Doctor: Looks at my N99

"you seem anxious about Covid."

Me: "Not anxious - realistic. Please check my chart - colds have put me in hospital."

Dr: Checks chart.

"Oh sorry - you should definitely keep masking. Do you want me to wear one?"

My Plea to Maskless Healthcare Workers Please stop doing this to patients. While I'm grateful the doctor dropped the "anxiety" remark quickly AND checked my chart - they never should have commented on my mask. They should have been masking too. If they absolutely cannot or will not mask for themselves - they should ‘mask mirror’ when they see a masked patient.

This idea that ‘only the vulnerable’ need to worry is causing a tremendous amount of harm. I was ‘lucky’ in that my chart clearly states that I’m vulnerable - so the doctor didn’t push back. What about people with less obvious circumstances? What about those caring for a vulnerable person but who are healthy themselves? Would the doctor mask for them?

The only difference between me and everyone else is that I KNOW I'm vulnerable.

I might even be slightly less vulnerable by virtue of the fact that everyone else has had repeated COVID infections (which we know damages your immune system) and I'm avoiding infection.

If you know enough about Covid to agree that a vulnerable person SHOULD be masking - shouldn't you ALSO be wearing one? You obviously understand it's more serious than we're being led to believe - so why aren't you protecting yourself and others?

This is extra true if you're a healthcare worker. You can't tell WHO is vulnerable just by looking at them.

By the time the doctor had made the comment, checked my chart and offered to mask - we had been in close proximity for seven minutes. That’s more than enough time to infect a patient.

While I of course appreciate they made the offer TO mask - at that point the damage was done. COVID can infect in seconds. If you see a patient masking - the decent, caring and smart thing to do is to don one yourself.

We must also be cognizant of the fact that many patients don't feel comfortable questioning a doctor given the imbalance of power. So while they may WANT you to put on a mask - once you've accused them of "anxiety" they're going to shut down. They won't ask. They won't risk deterioration of care.

This interaction went as well as could be expected - and yet it still put me at risk unnecessarily. It still resulted in my being psychologized. It still left me with a lack of trust and faith in the medical system.

How Can I Have Faith in a System That Ignores the Science? A system that puts me - and others just like me - in harms way? A system that allows healthcare workers to refuse to acknowledge the critical role they’re meant to play in our lives.

They're meant to HELP us. Not harm us.

I'm not a doctor. I can't treat myself. I can "just stay home" from almost ANY public setting - but I can't avoid the hospital. I'm not the only patient like this. We are all making huge personal sacrifices to keep safe in a world that has deemed us "expendable".

We're exhausted, angry, scared and frustrated. Yet despite how badly we've been treated and how much we've had to sacrifice - the place we go to GET BETTER is the place most likely to give us a deadly and disabling virus.

Does no one understand how backwards that is?

Now - we’ve all heard the tired argument ‘if your mask works why do I need to wear one’ - so let’s address the WHY and put that discussion to bed:

In a hospital setting - there are countless reasons a person might be unable to mask. In my case I have frequent anaphylaxis and when my airway is in jeopardy they must remove my mask.

People are vomiting, need oxygen, have dental emergencies or facial trauma. People have tracheostomies or sensory issues that make it impossible to mask. Babies and small children can’t mask. The list of people in a hospital who may be unable to mask is LONG.

These are sick people having a medical emergency and due to the nature of their condition - they can’t protect themselves. They are relying on others to protect them.

They have no control over other patients - but they should be able to expect that the staff they’re trusting with their life be willing to wear a mask for them. One way masking is good - two way masking is far better.

Disabled, elderly and vulnerable people are not expendable. We aren't "better off dead." We deserve safe access to all public spaces - but hospitals and medical facilities should be at the TOP of the list.

There's No Logical Reason to Oppose Mask Mandates In Hospitals It's where the sickest people are, they have no choice but to be there AND where the strongest bugs thrive.

Masking would prevent a great many nosocomial infection and it would SAVE LIVES.

Please - push for masks in healthcare. If you're a healthcare worker who sees a patient in a mask - put one on for them. Don't make them ask.

Don't psychologize them. Don't betray the trust they've shown you. They've literally put their lives in your hands. Don't take that for granted - it’s not an easy thing for many of us to do.

If you're a patient struggling because you can't access safe healthcare - know you're not alone. There are many of us struggling alongside you. Fighting for the respect and care we deserved. Saying proudly that we will not go gently to the wayside. We will NOT be expendable.

How Do Other Vulnerable Patients Feel? I posted on Twitter/X asking people if they would like masks in hospital. Asking if they had delayed or avoided care due to lack of masking. Asking healthcare workers to tell me why they did or didn’t mask.

The responses were overwhelming and demonstrated a very clear need for masking policies in hospitals. There were over a thousand replies from people who were either avoiding care and/or had been infected in a healthcare setting. There were actual doctors saying they’re not concerned with getting sick so patients can ‘mask if they want.’

There were heartbreaking stories of healthcare workers trying to protect themselves and their patients only to be told by administrators and/or superiors that they aren’t allowed because the masks remind people of the pandemic.

I’m sensitive to people who’ve gone through a trauma - but we are still IN a pandemic. If masks remind people of the pandemic - that’s a good thing. People need to know it’s not over and that they’re taking serious risks with their health.

If your trauma is so severe that you can’t mask for a vulnerable patient - or worse you lash out at a patient for masking - then you need to carefully assess whether you should still be in a patient facing role. There’s help for trauma - many chronically ill patients have been repeatedly traumatized in healthcare settings. We work through it as best we can - and for our sake (and your own) we need you to work through yours as well.

Given the sheer volume of responses - I’m going to turn this article into a series. This article will serve as MY plea to healthcare workers. Part Two will be a summary of the stories I received from patients who feel unsafe in healthcare. Part Three will be the responses from healthcare workers - including reasons WHY they mask and why they don’t.

My hope is that this series will encourage hospitals and governments to reconsider mandatory masking in healthcare. In the absence of a mandate - I hope people will send this article to any healthcare workers they know and perhaps it will convince them to do the right thing without waiting to be told.

Never forget - you have lives in your hands. You don’t need a mandate to mask up. The sooner we start masking in healthcare the more lives will be saved.

In Loving Memory of Tinu Lastly - I want to end this article with a tribute to disability advocate and Long Covid patient - Atinuke Abayomi Paul (Tinu). Tinu had cancer AND Long Covid and spent the last months of her life advocating for Masks in Healthcare. She was undergoing chemotherapy and most healthcare workers REFUSED to mask for her. Her first Covid infection left her with devastating disability. She was the definition of ‘high risk’ given she had cancer and was undergoing chemo - and still they refused to protect her. Unsurprisingly - she caught Covid again.

This should NEVER happen. Patients like Tinu deserve to be safe in healthcare settings. We all do.

She also spent a great deal of time trying to raise money to afford her chemotherapy - and spearheaded a number of mutual aid campaigns on social media. If you ever needed help, a boost, a share etc… you could count on Tinu. She understood the harsh realities of living with chronic illness - namely that you’re abandoned emotionally AND financially and often have to rely on crowd funding for support.

Her death has been a devastating blow to the disability community - and I hope that this article can serve as a reminder of what’s at stake when you choose NOT to take precautions in healthcare settings. Mask up for Tinu. Mask up for me. Mask up for yourself.

The community is raising funds to support Tinu’s family and pay off medical debt - if you’re in a position to help - you can access the Go Fund Me here: www.gofundme.com/f/honoring-tinus-legacy-with-compassionate-support