Author, speaker, advocate, soft-hearted lefty | Humanity in health care for all | Host of Give a Duck, peer support for health advocates suerobins.com | #MaskUp

Unceded Coast Salish territory
Joined September 2010
“Alright, that's it for me! Be good everybody!” – George Constanza going out on a high note. I’ll now be over at the Give a Duck community, a gentle space my team + I have created for health advocates to support and encourage each other. /1
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If you are positioning yourself as health leadership at any level too...you need to read this thread. It will make you uncomfortable. Read it anyhow. It is through your discomfort that you will grow.
If you are positioning yourself as left leadership (at ANY level), you have a moral obligation to be the voice in the room arguing for masks/ventilation at events & against COVID normalization eugenics. Let me say that again: you have a moral obligation to stand up to eugenics.
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I host a livestream once a month at Give a Duck on @MightyNetworks. This month's topic is Public Speaking! I'll share stories about anxiety, delivering a speech, how to craft a story that 'sticks', working with organizers, etc. Get an invite here: suerobins.com.
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Here are the deets: Sue's Livestream Give A Duck Wednesday February 1, 2023 at 10 am PDT Register by signing up for Give a Duck here: suerobins.com. There are no-cost + trial subscription options! Give a Duck is a community for peer support for health advocates.
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The government's decision to 'live with COVID' was a turning point in the pandemic. No longer let's collectively work to prevent this but you do you - a shift to blaming the patient instead of caring for each other as a society. It eerily reminds me of my cancer experience. /1
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When I was diagnosed with breast cancer at age 48, my mother said to me, 'oh well, it's just your turn to get cancer.' Like it was inevitable, so shrug. 🤷‍♀️ This fatalism kills empathy for patients. I see this happening with COVID too. /2
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Cancer is common - more than 1/3 of us will get cancer in our lifetime. Prevention is laid at the feet of patients. As an in-law said as I was recovering from surgery: 'maybe now you will live a healthier life.' Patient blaming is a real thing when you get sick. /3
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Health care does a crappy job at prevention. They talk about, but what they mean is: it is up to you patients not to get sick. You've noticed the government is NOT giving us tools to help us NOT get sick with COVID. In cancer, we have to fight for our own cancer screening. /4
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A LOT of people make money off cancer foundations + treatments. It is big business. The mental health + physical costs of having cancer? Another shrug. There are so many of us walking around with medical PTSD from how we are treated, but we are told to get back to normal. /5
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The parallels between cancer + COVID highlight how patients are treated in health care + society. Beyond acute treatment, it is your own problem. Gov'ts have chosen this route to absolve themselves of responsibility. It is patients who are holding the bag. /6
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Patients are told that it is our responsibility to advocate for health care change. Speak up during appointments! Lobby the government! Patients! The people who have suffered, the people in pain, the people who have the LEAST possible power in health care. /7
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Patients need allies. Advocates within the health system, please join us. As health care regresses more + more back into system-centred care, I'm grateful to those who speak up + say, hey what about the patients? We need you now more than ever. /FIN
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My LinkedIn feed is chock-full of health administrators + clinicians posting unmasked selfies of themselves at events. People who do this are NOT allies of patients. You don't care? The peer pressure is too much? You know we can see you, right?
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To the geneticist who asked me when Aaron was three years old: "What happens when he isn't cute anymore?" my answer 16 years later is: He's handsome. He's handsome now. Ps For geneticists everywhere: the value of a human life doesn't hinge on whether one is cute or handsome.
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Pps The value of a human life doesn't hinge on whether a person is disabled or not either. New year, new headshots by Ryan Walter Wagner, new talent agency Kello Inclusive. #DisabilityRepresentation
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“…you can listen to what people have to say...” - @adriandix Here’s the thing about listening. It’s NOT engagement. Are you listening to people who aren’t yes-people + who have different experiences than you do? If not, it’s tokenism. /1
UPDATE: I caught up to #bcpoli health minister, Adrian Dix, to discuss the muzzling of healthcare workers More on the duty to report, whistleblower protection, and his insistence that he’s listening Pt 3 of my @CTVVancouver coverage 👇 bc.ctvnews.ca/culture-of-fea…
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Do you reflect on your own values, grow + importantly TAKE ACTION on what you’ve heard? If not, it’s tokenism. Listening is the first step. Fake listening without action is worse than not listening at all. It’s a waste of time + in fact a betrayal of people’s stories. /FIN
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This will be a health IT professional insider's view of digital health! Answering the pesky questions I ask him as a patient, like: Why don't all my doctors have my records? Why can't I see my own health information? Why do my referrals keep disappearing? WTF is with the faxes?
I have a new event! 'Digital Health Care De-Mystified', a non-nerdy 🚫🤓 review of health care information sharing. I know. *Very* exciting! Where: @suerobinsyvr's Give a Duck Community 🦆 When: Feb 9, 5pm PST RSVP on the site or request an invite: suerobins.com.
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That’s the great thing about books - they are a rare permanent thing in our fleeting world. My son Aaron (pictured above). asked me the other day when my third book is coming out. 😜 /2
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I’m like, dude, books don’t come out of thin air like magic. TBH, I’m too distraught by society’s response to the pandemic to do much creative work, as COVID minimizing isn’t an option for our family. 🙈 🙉 🙊 Some days it feels like we are just trying to survive. /3
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Anyhow, thanks to everyone who bought Ducks in a Row! And the amazing *17* superstars who made the time to write endorsements for me. Extra points if it prompted a conversation about health care change! That's why I wrote it. There IS a better way./FIN
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