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Anne Verret-Speck's avatar

Thank you for taking part in this fruitful discussion! I sympathize with the reservations you had but I'm so glad you made the choice you did!

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steve's avatar

I am very glad KJ took part in this meeting. It is very good to keep communication lines open. However, she points out that MAHA has been confused over the following points"

Why does my newborn need the Hepatitis B vaccine if we’re not at high risk?

Why did Covid-19 recommendations change so often?

Why are we beholden to a pharmaceutical industry that fueled an opioid epidemic?

The answers to these questions are easily found by simple computer search. So, the problem is that the information is not being shared, but that it, somehow, is easier to find quack answers to these questions. The problem seems to be that people first jump to a conclusion, then do "research" to confirm their bias. That is faulty, backward reasoning. THAT is the problem we need to address and, while I have been blogging for many years in an attempt to provide FACTS, I admit I do not know how to tackle this bias confirmation problem.

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Lisa's avatar

Agree Steve- Grateful KJ opened the door and had these challenging conversations.

I have found that when I try to "meet them halfway" and have open dialogues or explain the science behind something, and REALLY listen to the other side, I'm NOT met with the same openness to hear me out. I'm met with a variety of conspiracy theories back from podcasters or what they saw on the internet and then I get frustrated that they will trust this information over 50 medical journal papers I supply them. Its very frustrating to "really listen" and be open minded when you don't get the same in return.

I applaud Kaitlyn for giving it a try and truly hope something positive comes from this.

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steve's avatar

Lisa, I know what you talk about. I too have had similar experiences as you have had. I have lost long term friends by being resistant to conspiracy theories. I have been blogging on the covid pandemic since March 2020, and have received a LOT of vitriol because I simply describe the science behind everything. All that is why I say,

"The problem seems to be that people first jump to a conclusion, then do "research" to confirm their bias. That is faulty, backward reasoning. THAT is the problem we need to address and, while I have been blogging for many years in an attempt to provide FACTS, I admit I do not know how to tackle this bias confirmation problem."

How do we address that??

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Maureen's avatar

I think you’ll find a part of the problem is that there are no consequences for lying. We really need a public health version of the southern poverty Law center or earth justice.

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steve's avatar

Clearly not enough! But there have a couple of MDs who lost their license for good or temporarily for lying about vaccines. But, enforcement needs to be more stringent and uniform.....

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Kulkat's avatar

Agree Lisa! I walk into a hospital room to discuss newborn medications (hep B vaccine, vitamin K, and erythromycin eye ointment) and am often met by families who refuse the medications and don’t want to listen to me. When I ask about the refusal or any questions they might have they say “they’ve done their research”. 🤦🏻‍♀️ I went to college, med school, and did a pediatric residency (granted, 30 years ago before the internet!) but they trust the internet more than me. And I’m kind and compassionate when I do this. Occasionally I will have someone change their mind, but most of them are already set in their decision.

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matthewdavidhealy@gmail.com's avatar

I have had to block some longtime friends because they persist in rejecting logic no matter how hard I try to explain.

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Kate C's avatar

Steve: First I am deeply grateful to KJ for her bravery and doing this. I believe it’s what needs to be done. Secondly, although I am a 72-year-old retired physician I don’t think searching the answers to those questions is easy. Maybe it’s just my age making it hard for me to keep up with technology but, especially now with the onset of AI, there are more faulty answers out there than true answers. One has to be pretty sophisticated to sort it through and chase down each link from the AI and see if it’s real. Weekly, I am having to explain to someone the basic science behind why an influencer’s claim is not biologically plausible.

Being in good people and working hard is not enough, we have to listen to others.

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steve's avatar

Hi Kate, Thanks for your comments. I am a 71 yo retired medical school professor who keeps up with the tech. And what I described above is based on my experience with disinformation purveyors who have used technology to confirm their preconceived conclusions. The truth is very easy to find using technology (my blog for instance), but so is disinformation. We are talking about folks who choose disinformation....

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Miriam Diken's avatar

I think her point is that public health needs a better communication strategy than just making information available to those doing computer searches. The problem is that public health has been doing too much information sharing/disseminating and not enough listening and connecting. Too much emphasis on facts, not enough on empathy. Public health leaders failed to grasp how our information landscape has changed, especially how social media and its diversification of info sources collides with the powerful appeal of confirmation bias (as you note.)

Perhaps - and this is just me brainstorming - public health experts and leaders, or at least some portion, can reframe their roles as "public health influencers." People are not jumping to conclusions out of the blue; they are absorbing the narratives around them, too many of which are rife with misinformation. Rather than just trying to stamp out preconceptions, public health leaders might go on the offensive and start their own movements, bringing knowledge and values together as they already do, with greater grassroots mobilization.

My 2 cents, as a non-expert. Thank you, for what it's worth, for providing facts in your blogs. I certainly don't mean to imply that's not valuable and necessary.

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KPW's avatar

I completely agree. I see vaccine hesitancy increasing by the day in my pediatric practice, and when I go on social media, I understand why. Last week in my Facebook feed, I was being “suggested” links and rhetoric from anti-vaccination accounts. If I, as a pro-vaccine, pro-science individual am seeing these posts, imagine what the algorithm is feeding vaccine-hesitant parents who are clicking on these links.

I find myself increasingly frustrated with the messaging from the AAP and other public health organizations regarding how to talk with parents about vaccine hesitancy. I attended a webinar on measles today hosted by my state’s DPH, and much of the advice on addressing vaccine hesitancy still leans paternalistic. This is not meeting the moment or the deep mistrust that many people have in the healthcare system, and until we can approach these topics with more humility, we will continue to lose to disinformation. As an elder millennial who is fairly plugged into social media, I wonder if there is a lack of understanding of what is really happening in that space by those in leadership. (Perhaps reflective of democrats’ apparent inability to leverage social media movements in their favor.)

Thank you, KJ for your continued dedication to exploring new ways to reach people. At their core, the overwhelming majority of vaccine-hesitant parents are not neglectful or unintelligent. In fact, they are deeply concerned about their children’s wellbeing - a concern that is being successfully exploited by the fear-mongering of anti-science.

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Laura Eastman's avatar

Yes to this->"somehow, is easier to find quack answers to these questions. The problem seems to be that people first jump to a conclusion, then do "research" to confirm their bias."

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matthewdavidhealy@gmail.com's avatar

Because I have expertise in Virology, I get LOTS of messages from friends and relatives. One VERY common type of question is basically “somebody I know posted a link to this thing full of sciency words that I don’t understand: is this true or is it nonsense?”

Most of them are very grateful for my explanations.

But where do people who do not happen to know an expert personally turn for such answers? In many cases, I think they decide whom to trust based on political views.

My own heuristic for deciding which media organizations to trust is, how well they do in the areas where I happen to have relevant expertise.? In areas outside my expertise, where like anybody I must decide whom to trust, I start by asking “whom do the media outlets that get it right in my fields of expertise trust?”

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steve's avatar

I agree. When I detect pure crap around my expertise, I too tune out that source....

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Jan H's avatar

However it is not always easy to know who online to trust

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Susan Stone's avatar

Jan, when I do research, I go to places/sites where I know I will get good information, like The Cleveland Clinic, The Mayo Clinic. Admittedly, I have a background in the medical field (working in group health insurance, plus working toward an MA in Occupational Therapy years ago), so it is easier for me to recognize good information. The other thing I look for is for what they say makes sense to me, unfortunately also a product of my education. I've also found sites like WebMD and Healthline to be pretty good. It might be helpful to share those sites with people who don't have my life experience.

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Ellen Luby's avatar

You don't need a background in medicine to be able to recognize Mayo and the like as providers of good information (I don't have such a background).

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Susan Stone's avatar

I am happy to hear that.

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Ed Killian's avatar

Yes The Cleveland Clinic has published some very interesting studies on all 51,000 of their employees re the COVID and flu vaccines.

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Susan Stone's avatar

They've always been dependably good, but I am really impressed with what you've shared.

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Brenda Barnes's avatar

Democrats have lost the last two elections, in part because they lost the Internet. We have to learn how to communicate where the majority of people find news and information these days, and that’s the messy Internet (not computer searches and recognizing reputable sources of information). I also think person to person communication is key. I agree with KJ that we need to find commonalities and build on them as well as welcoming people back with no judgment when they see the flaws on the other side.

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Susan Stone's avatar

Brenda, I am feeling really stupid reading your comment, because I have no idea where to look for news and information without doing computer searches. Where do you find those things? Or how?

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Kulkat's avatar

Maybe Instagram and TikTok?? I feel like that’s what most younger people do nowadays (I’m 58yo and not on either of them, but my kids in their 20s are). Everything comes “to” them - they don’t necessarily go to google to search it out….

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Susan Stone's avatar

Thank you for that information. I'm about to turn 80, and have never been near either of them. I've never understood how social media work anyway.

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Brenda Barnes's avatar

I do searches exactly the way you do, but many voters don’t. My nephew who is in college doesn’t read reputable news sources and gets all his news from TikTok. It’s frightening to me, but if we don’t show up there, we are ceding the space to the science deniers and MAGA influencers.

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Susan Stone's avatar

Good point. I think Kamala Harris got that while she was campaigning, but unfortunately it didn't make enough of a difference.

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T Allen's avatar

There are more really good people on Substack who are filling in the gaps. Dr Ryan McCormick has some great info and is not overly technical. I'm sure there are others. Maybe KJ could recommend a few more? She has 3 people listed below. :-) https://mccormickmd.substack.com/

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Susan Stone's avatar

I wish I had the time and energy to pursue more Substacks, but at this point I don't. I need my day to have 24 hours to read Substacks and 24 hours to sleep.

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steve's avatar

try sites from professional organizations. Good sources for medical information that a lay person can understand come from the CDC, Mayo Clinic, The Cleveland Clinic and from many medical schools.

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Susan Stone's avatar

Haven't tried med schools yet, but the others you mention I go to regularly. Med schools are a good idea.

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steve's avatar

NIH has good information too.....

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Susan Stone's avatar

I know. I look at their site, too. The only reason NIH and CDC aren't always the first ones I go to is because I am very familiar with Mayo and Cleveland from my days in group health insurance, working as a medical claims consultant.

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Sue's avatar

Confusion about

“Why did Covid-19 recommendations change so often? “

Over and over again I heard Dr. Anthony Fauci answer this question.

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Karen's avatar

Unfortunately, a simple computer search also leads to an incredible amount of misinformation, disinformation, and outright lies - many of which are perpetrated by well-meaning people, and many of which are perpetrated by people selling alternative treatments. The latter play on people's fears rather than appealing to their rationality - and fear will overcome rationality nearly all the time.

A parent who is told their child will suffer serious illness if vaccinated for a disease that is widely controlled by vaccination - and therefore one they have not seen themselves - is an easy target for such people. There are massive numbers of anti-vaccination sites, which cherry-pick data showing that vaccination is far more dangerous than catching a vaccine-preventable disease; I am just young enough to remember measles parties, although my parents went for vaccination instead (it was the late 60s) - and they were given grief over getting a vaccination when they could just expose my sister and I and be done with it - but my older sister had just gotten over chicken pox, which she gave to me, and they didn't want to repeat the experience with measles.

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Ni's avatar

Not just told. A lot of these parents have seen their child, or a child they know, experience some sort of health problem or illness after a vaccination. (For example, autism is often diagnosed after vaccinations.) A temporal relationship + things they heard about vaccines not being safe, even if they didn't believe it at first = causation. Not just fear, but their lived experience. And, as you point out, measles is not part of this experience. To them, distrust in vaccines IS rational. We need to find a better way to address that.

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steve's avatar

a BIG part of the problem is lay people who have never been in a lab thinking that they know more than medical scientists. That is like driving a car with a smoking engine and rejecting a mechanics suggestion to replace the head gasket and insisting you know better and that all it needs is to have the tires rotated.

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Karen's avatar

I've never been in a lab, and yet I know that the medical researchers who create vaccines and medications, and the medical professionals who endorse their use, know far more than I do. The parents who are flamboozled into believing that vaccines are dangerous still take their children to doctors when they're sick - so at some level, they believe doctors know what they're doing too - but they have been mislead by people who are using their concern for their children to make money off that concern.

To restate your analogy: this is like driving a car with a smoking engine and knowing - because some quack who is well-known and well-liked, and knows just enough to mislead you for their own benefit - that it is better to top off the oil with that "special oil" that your neighbor sells than to get the oil changed regularly; after all, regular oil changes are just the way "big mech" gets your money.

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steve's avatar

I agree with all you wrote!!

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Martha's avatar

This is where I am stumped as well. I have not felt confused by vaccine recommendations because I follow the science. I did not feel confused by changing COVID recommendations because I understand that scientific advice evolves as knowledge is gained. I am trying to be patient but, as you note, Steve, the information is there. Perhaps one of our huge tasks is to teach kids scientific method and sourcing from a very young age.

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steve's avatar

Unless school curricula have changed since I was in school, science education is there. But, it usually does not cover valid research approaches, which might be above the heads of students until they have a better grasp of other things like logic, statistics, and have a basic fact base for science information. Also, the rise of popular media venues has coincided with the rise of disinformation. You make an interesting point about teaching kids how to look for disinformation, or better "sourcing" their information. THAT was not taught when I was in school because we did not have all the social media tools then. Interesting idea....

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Martha's avatar

I appreciate your response, Steve. In my psychotherapy practice, I work with a lot of teachers. Some are trying diligently to help students learn research methodology and discern fact from fiction when online. But their time is strained by requirements that are beyond their control. I got a good start from my educated parents, but didn’t really dig into research methodology until my second master’s degree, and didn’t get steeped in it until my doctorate. Most people do not have the luxury of this level of education. We need to bring it into public schools - ideally, starting in middle school.

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Sue's avatar

Why did Covid-19 recommendations change so often?

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steve's avatar

covid was a brand new disease with a constellation of very weird and unrelated symptoms. It took medical pros some time to catch up with what it all entailed. For examples, you had disparate symptoms like brain fog, loss of smell, black toes, lungs that looked like chocolate pudding, etc. Then there is long covid, which we still don't fully understand. As new information came along, the recommendations were updated.

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Sue's avatar

Regarding confusion about:

Why did Covid-19 recommendations change so often?

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ANUPRIYA GROVER-WENK's avatar

As a family medicine physician, as much as I have an issue with the MAHA movement, I do think we have stopped listening to each other and are just reacting. I think we need people to actually listen to the underlying issues that get lost in the media's desire for clickbait headlines and likes. Because those parents who you met with are actually struggling with real things and are suffering from a broken healthcare system that I work in and struggle with. There are days where I wonder how the average American navigates our system and more so now, with families losing resources every other day.

Thank you for your work and your compassion to meet with them. I am sure there are things we can learn from those that support movements that we don't agree with.

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Susan, RN-Retired's avatar

Sitting here with my morning coffee & opened up my email inbox. Yours was the 1st one. My heart is so overwhelmed with gratitude for the process & final decision you made to accept the MAHA invitation. The insights & perspectives you shared give me renewed hope. I will being sharing what you have written with my fellow healthcare friends & family members. We have all been floundering & questioning how we can address what is happening to our healthcare system, as well as what we can do as individuals. I'm guessing that when you started your site on Substack, that you had no idea you would one day end up being a lifeline for so many of us. Life is such a journey. One door closes & another opens. Thank you from the bottom of my heart.

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Tim Shaw's avatar

Thank heavens you have more patience than I do. I probably would have rolled my eyes and walked out. You deserve everyone's respect and gratitude!

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matthewdavidhealy@gmail.com's avatar

Maybe the start of a more productive conversation could basically be, "I promise I will listen to how you feel if you promise to listen to how I think."

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Emily's avatar

That premise won’t work because it is fundamentally dismissive. If you said that to my family, they would understand that you meant you would listen, but their feelings weren’t valid when compared to your intelligent thinking. And they would understand that you assumed they only had “feelings” when in fact they think as well.

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matthewdavidhealy@gmail.com's avatar

Then please suggest a premise that does not begin with the assumption that everybody's opinion on scientific issues has the same weight as that of somebody who has studied the subject with close attention to detail for many years.

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Emily's avatar

I think you have to start with an assumption of goodwill and intelligence. From there I would usually ask questions about where their information is coming from, and what makes them consider those sources to be trustworthy. I always, always, always try to find some point, no matter how small, where I can agree with them. From that posture you can often (not always, but often) have a non-confrontational conversation and open them to considering different sources. Without an assumption of intelligence, you will never make any progress with someone who disagrees with you.

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Ni's avatar

I agree with Emily's response about asking questions about why they think what they do. They tend to be much more open when they feel heard, and it also gives you important information about where they're coming from, so you can avoid assumptions, and not waste your time on the wrong topics. Do not underestimate how informative questions can be.

On top of that, instead of telling them you've studied for years so you have a different perspective, try to just give them that different perspective. You probably have some things to say that hadn't occurred to them before.

Or, if you're not the expert but you're citing someone else who is, maybe talk about YOUR why, why you consider this trustworthy, why that study is important.

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John M Rathbun MD's avatar

WOW! I'm agog at what you're accomplishing. Please keep it up!

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JG's avatar

Your “big girl pants” led you to the nexus - the place where understanding, empathy, and hopefully change is possible. Thank you for modeling such grace.

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Kathryn L Delaney's avatar

Thank you for taking the risk. Thank you for sharing the experience. You softened my stance. I was a Certified Industrial Hygienist and directed OSHA operations in North Texas. The pandemic started after my retirement but I still tried to share information on protective measures within my circle. That went as you’d guess, and only worsened as other public health issues arose. I’ll admit my position hardened. This report reminded me of the listening and sharing necessary to convince employers and employees to adopt occupational safety and health measures, not least of which was supporting the hard work of change with real world reminders of the cost benefits of the new way.

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M. Stankovich, MD, MSW's avatar

I personally have never worked for a for-profit anything, nor ever accepted anything from a pharmaceutical company, so be automatically referred to as a "shill" or a "murderer" or "complicit" when, as a psychiatrist, I have never vaccinated anyone, child or adult, for simply attempting to dispute disinformation is disconcerting, to say the least. But on the other hand, I have asked my complaining colleagues if they have ever had to take a full day off of work to sit in one of our walk-in clinics, that does not make appointments, with a sick child; or later to wait for 90-minutes for a prescription from our pharmacy; and then fear they may lose their Medicaid coverage, or perhaps their job. A computer search to "verify" information? That would mean taking a 25-minute bus ride, on a Saturday (with a million other things to do), to go to the library. I ask myself why they shouldn't trust MAHA if they ever heard it! We are truly failing a large segment of our service community - minorities, seniors, the disabled, the mentally ill - who are traditionally underserved, scorned for the time & the services they "devour" because they have not received preventative care, and exhaust us by their anger and the anger of their families. And rather than listen and empathize, we apply another temporary patch and move to the next cubicle. What breaks my heart is that I supervize a group of PGY-1 psychiatrist, and I can already tell, this is not the type of practice for them. And it all repeats... I admire your persistence. The work, then, becomes translating words into action.

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Sandi Sherman's avatar

Thank you for doing this. It is a model for the rest of us to follow.

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Otto A Rosenzweig's avatar

This is one of the most hopeful posts I've seen. Thank you for all your efforts to bridge the chasm between "Science" and MAHA.

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Lauren S's avatar

Agreed!

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Cecilia Pitas's avatar

I'd be interested to hear more about how the mother of the autistic adult feels about RFKjr's hate filled attacks on people with autism?

Glad you had a positive-ish experience.

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Emily's avatar

I’d be interested to hear more about that as well. My guess is that she didn’t hear RFK’s comments as “hate filled” at all, but as an empathetic understanding of the difficulty of her own life. I have a child with autism and family and friends with autistic children as well. What I see is that the more support the child needs, the more exhausted the parent is and the more they may wonder why this happened to their child and family. It doesn’t mean they don’t love their child, it means their life is legitimately difficult and they are tired and often sad.

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Laura Eastman's avatar

I am in awe of your listening skills. I struggle with listening and really hearing the other perspective. You are amazing and I hope you know you made the right choice.

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George D. Bussey, MD, JD, MHA's avatar

I think this was a great example of a different kind of DEI. You had a diverse group of people with diverse life experiences. It was an equitable engagement. Everybody, regardless of educational background got to share their experiences and their concerns. And obviously, it was inclusive of a broad spectrum of opinions, beliefs and experiences. Was it Mark Twain that said something about how traveling broadly makes prejudice difficult to hold on to? Seems that open, honest listening to different people and their experiences does the same thing, even if you aren't traveling very far.

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Gretchen's avatar

Well, their "common thread: heartbreak, betrayal, and thus, mistrust" has now become a common thread among public heath professionals, health care workers, and scientists. How can we trust the same people that cried "SOCIALISM!" when Michelle Obama tried to give kids healthier school lunches, but now want to engage on school lunches in earnest? How can we trust people that want "broader access to understandable and helpful information" but refuse to accept the information when it is available? The work can't be all on the side of public health with no true effort given by those bought into MAHA.

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