Everything I Learned Getting Kicked out of America's Biggest Antivax Con
June 21, 2019 3:54 AM Subscribe
Everything I Learned While Getting Kicked out of America's Biggest Anti-Vaccine Conference Jezebel's Anna Merlan visits, and is ejected from, the AutismOneconference.
Though I’ve spent years covering the anti-vaccine movement, I’ve never attended AutismOne, and I was eager to go. But I also knew that their rules for the media were exceedingly strict. In order to receive a press pass, AutismOne requires reporters to jump through a few hoops that seem designed to make sure they are ideologically aligned with the conference organizers. Journalists wishing to attend must “provide a letter of request from the media outlet,” per their website, along with “six previous professionally published work samples relevant to the topic to be covered, how the information is to be documented (e.g., taking notes, interviews, video recording, audio recording, photography) and specific details on how and where the material will be utilized.”
[...]
Yet for all its repetition, AutismOne is a useful place to visit. I got a glimpse at the priorities of vaccine skeptics in America, and the ways they’re discussing (and downplaying) a global surge in measles.
Though I’ve spent years covering the anti-vaccine movement, I’ve never attended AutismOne, and I was eager to go. But I also knew that their rules for the media were exceedingly strict. In order to receive a press pass, AutismOne requires reporters to jump through a few hoops that seem designed to make sure they are ideologically aligned with the conference organizers. Journalists wishing to attend must “provide a letter of request from the media outlet,” per their website, along with “six previous professionally published work samples relevant to the topic to be covered, how the information is to be documented (e.g., taking notes, interviews, video recording, audio recording, photography) and specific details on how and where the material will be utilized.”
[...]
Yet for all its repetition, AutismOne is a useful place to visit. I got a glimpse at the priorities of vaccine skeptics in America, and the ways they’re discussing (and downplaying) a global surge in measles.
Some of this can be blamed on social fallacies about parenting, which blame parents -- especially mothers -- for anything "wrong" with their children.
And some of is down to the real problems with medicine and health care provision and allocation in the United States, from costs to genuine gouging and rush-to-market and study-gaming. It's a system that also incentivizes professionals to see patients as problems, not as people.
But a lot of it is ultimately the just-world fallacy, the need for someone or something to blame because otherwise we would have a feeing of great powerlessness. Empathy is not a complete solution, and does not excuse the dangers anti-vaxx poses to vulnerable groups, such as children and immunocompromised people.
This collides with the usual cultural amnesia; once pandemics and disabling illnesses are mostly a memory, the urgency and the radical health improvements that mass vaccination produced have little emotional resonance and can become targets of skepticism. (See also, public education disinvestment, which receives much of its support from people whose forbears benefitted substantially from compulsory public education and handed down the advantages but not any powerful cultural memory of the Before Times.)
But much of the draw anti-vaxx is clearly empathetic, a community where people share fear and anger and, indeed, a kind of vulnerability.
posted by kewb at 5:56 AM on June 21, 2019 [34 favorites]
And some of is down to the real problems with medicine and health care provision and allocation in the United States, from costs to genuine gouging and rush-to-market and study-gaming. It's a system that also incentivizes professionals to see patients as problems, not as people.
But a lot of it is ultimately the just-world fallacy, the need for someone or something to blame because otherwise we would have a feeing of great powerlessness. Empathy is not a complete solution, and does not excuse the dangers anti-vaxx poses to vulnerable groups, such as children and immunocompromised people.
This collides with the usual cultural amnesia; once pandemics and disabling illnesses are mostly a memory, the urgency and the radical health improvements that mass vaccination produced have little emotional resonance and can become targets of skepticism. (See also, public education disinvestment, which receives much of its support from people whose forbears benefitted substantially from compulsory public education and handed down the advantages but not any powerful cultural memory of the Before Times.)
But much of the draw anti-vaxx is clearly empathetic, a community where people share fear and anger and, indeed, a kind of vulnerability.
posted by kewb at 5:56 AM on June 21, 2019 [34 favorites]
What's fascinating is the measles epidemic that randomly broke out in remote jungles of the Congo, right after Blackwater/ze/latest name showed up to mine coltan et cetera. If you're going out to sneak around remote random places, try not to infect the local populace with your diseases, white men with dirty blankets.
posted by hugbucket at 5:59 AM on June 21, 2019 [14 favorites]
posted by hugbucket at 5:59 AM on June 21, 2019 [14 favorites]
Background news—the WaPo broke this story behind the anti-vax movement: Meet the New York Couple Donating Millions To The Anti-Vax Movement
posted by Doktor Zed at 6:08 AM on June 21, 2019 [15 favorites]
A wealthy Manhattan couple has emerged as significant financiers of the anti-vaccine movement, contributing more than $3 million in recent years to groups that stoke fears about immunizations online and at live events — including two forums this year at the epicenter of measles outbreaks in New York’s ultra-Orthodox Jewish community.Naturally the disgraced Andrew Wakefield showed up at the AutismOne conference, as did his Vaxxed! co-producer, ICAN's Del Bigtree.
Hedge fund manager and philanthropist Bernard Selz and his wife, Lisa, have long donated to organizations focused on the arts, culture, education and the environment. But seven years ago, their private foundation embraced a very different cause: groups that question the safety and effectiveness of vaccines.
How the Selzes came to support anti-vaccine ideas is unknown, but their financial impact has been enormous. Their money has gone to a handful of determined individuals who have played an outsize role in spreading doubt and misinformation about vaccines and the diseases they prevent.[…]
The Selz Foundation provides roughly three-fourths of the funding for the Informed Consent Action Network, a three-year-old charity that describes its mission as promoting drug and vaccine safety and parental choice in vaccine decisions.[…]
Tax filings for the couple’s charitable foundation show they began supporting the movement in 2012, when they gave $200,000 to a legal fund for Andrew Wakefield, one of the most important figures in the anti-vaccine movement.[…] After he launched two nonprofits in 2014, the Selz Foundation donated $1.6 million to the groups over the next several years, according to tax records. One, the AMC Foundation, was registered as a public charity to fund documentaries about public health issues. The other was a Texas nonprofit corporation.
posted by Doktor Zed at 6:08 AM on June 21, 2019 [15 favorites]
There's a connection with the White Savior Industrial Complex as detailed in this recent post on the blue; someone is pushing MMS (i.e. the bleach "cure") in Africa, just as it was pushed at AutismOne before the quack got banned from Illinois.
posted by Halloween Jack at 6:40 AM on June 21, 2019 [4 favorites]
posted by Halloween Jack at 6:40 AM on June 21, 2019 [4 favorites]
Andrew Wakefield should be in prison.
posted by Ahmad Khani at 6:49 AM on June 21, 2019 [42 favorites]
posted by Ahmad Khani at 6:49 AM on June 21, 2019 [42 favorites]
Here's a terrifying and sad on-the-ground report from a local "informative vaccine lecture" at a neighborhood 'wellness' clinic in San Francisco (Twitter thread).
posted by PhineasGage at 7:12 AM on June 21, 2019 [7 favorites]
posted by PhineasGage at 7:12 AM on June 21, 2019 [7 favorites]
Just the other day I was walking on Mission and there was some chalk writing and flyers in my neighborhood saying "Vaccines cause Autism" with some quack doctors info on it. I couldn't rub out the chalk writing but I could tear down the flyer. Someone needs to shut down the chiropractor in Noe. Shit like this is why Chiropractors are denounced as quacks in askme.
posted by Homo neanderthalensis at 7:36 AM on June 21, 2019 [8 favorites]
posted by Homo neanderthalensis at 7:36 AM on June 21, 2019 [8 favorites]
One key thought from the article:
One of the newer currents I saw at the conference, pushing its way insistently to shore, is something I’d call An All-Encompassing Theory of Perpetual Sickness. There’s a push to try to convince an ever-growing number of people that they—not just their children—are sick too. And where there is sickness and disorder, there is, of course, a boundless potential for profit.
posted by doctornemo at 8:20 AM on June 21, 2019 [17 favorites]
One of the newer currents I saw at the conference, pushing its way insistently to shore, is something I’d call An All-Encompassing Theory of Perpetual Sickness. There’s a push to try to convince an ever-growing number of people that they—not just their children—are sick too. And where there is sickness and disorder, there is, of course, a boundless potential for profit.
posted by doctornemo at 8:20 AM on June 21, 2019 [17 favorites]
Re: the hedge funder funding a lot of this - once more, if we're going to keep wading more deeply into plutocracy, this is just one small sample of the kind of thing we have to expect.
posted by doctornemo at 8:21 AM on June 21, 2019 [9 favorites]
posted by doctornemo at 8:21 AM on June 21, 2019 [9 favorites]
I recently discovered an acquaintance was an anti-vaxer, or certainly had been when her kids were young. They're in their twenties now and one of them has a girlfriend who's in nursing school. They were sitting around the dinner table when the issues of vaccinations came up and her son rather sheepishly admitted he hadn't had any.
Let's just say things got interesting from there.
posted by philip-random at 8:45 AM on June 21, 2019 [7 favorites]
Let's just say things got interesting from there.
posted by philip-random at 8:45 AM on June 21, 2019 [7 favorites]
Man, these people are so evil, and prey on nervous and vulnerable communities.
Del Bigtree, a former producer for a CBS TV show called The Doctors ... teamed up with Andrew Wakefield to produce the anti-vaccine movie Vaxxed and has been remaking himself, very successfully, as a celebrity in the anti-vaccine world.
Bigtree is a talented, if overheated, speaker; at a recent rally in Texas he pinned a yellow star to his own lapel, similar to those used in Nazi Germany to identify Jewish people. “For those Hasidic Jews in New York right now, who never thought this moment would come, I am saying, ‘I stand with you,’” he said at the rally. “How are we going to know if you’re not vaccinated, how are we going to arrest you? Maybe we’ll do it the same way we did the last time.”
posted by ChuraChura at 9:12 AM on June 21, 2019 [9 favorites]
Del Bigtree, a former producer for a CBS TV show called The Doctors ... teamed up with Andrew Wakefield to produce the anti-vaccine movie Vaxxed and has been remaking himself, very successfully, as a celebrity in the anti-vaccine world.
Bigtree is a talented, if overheated, speaker; at a recent rally in Texas he pinned a yellow star to his own lapel, similar to those used in Nazi Germany to identify Jewish people. “For those Hasidic Jews in New York right now, who never thought this moment would come, I am saying, ‘I stand with you,’” he said at the rally. “How are we going to know if you’re not vaccinated, how are we going to arrest you? Maybe we’ll do it the same way we did the last time.”
posted by ChuraChura at 9:12 AM on June 21, 2019 [9 favorites]
Re: the hedge funder funding a lot of this - once more, if we're going to keep wading more deeply into plutocracy, this is just one small sample of the kind of thing we have to expect.
The redistribution of hoarded wealth is a public health issue
posted by The Whelk at 9:19 AM on June 21, 2019 [32 favorites]
The redistribution of hoarded wealth is a public health issue
posted by The Whelk at 9:19 AM on June 21, 2019 [32 favorites]
A friend whose son is autistic put it well: if you'd rather your kid died of measles than lived with autism, something is seriously wrong with you.
posted by bile and syntax at 9:54 AM on June 21, 2019 [50 favorites]
posted by bile and syntax at 9:54 AM on June 21, 2019 [50 favorites]
A friend whose son is autistic put it well: if you'd rather your kid died of measles than lived with autism, something is seriously wrong with you.
Yes, but they don't see it that way - as they don't believe that measles, chicken pox, etc kill - that they are just minor inconveniences like the common cold. This idea drives the idea that the measles of today is a 'science-created superbug', which is mentioned but not expanded upon in the article.
posted by The_Vegetables at 10:56 AM on June 21, 2019 [3 favorites]
Yes, but they don't see it that way - as they don't believe that measles, chicken pox, etc kill - that they are just minor inconveniences like the common cold. This idea drives the idea that the measles of today is a 'science-created superbug', which is mentioned but not expanded upon in the article.
posted by The_Vegetables at 10:56 AM on June 21, 2019 [3 favorites]
Last week I thought about making my first FPP based on the NYT article ”Bastion of Anti-Vaccine Fervor” and then linking to this Minnesota school vaccination rate search tool, but it was too depressing.
The thing about the NYT article that got me was the way the journalist focused on the mothers’ educational background, especially the anti-vax mom with a masters in public health policy. As a person with an MPH, I was tempted to start my own campaign against her university to rescind her degree. But really this whole wave of idiocy and rich exceptionalist privilege is just one off-shoot of the same at all levels of American society and government, so I don’t have anything else to say except an inevitable future “I told you so” while praying that my loved ones are not harmed.
posted by Maarika at 11:17 AM on June 21, 2019 [8 favorites]
The thing about the NYT article that got me was the way the journalist focused on the mothers’ educational background, especially the anti-vax mom with a masters in public health policy. As a person with an MPH, I was tempted to start my own campaign against her university to rescind her degree. But really this whole wave of idiocy and rich exceptionalist privilege is just one off-shoot of the same at all levels of American society and government, so I don’t have anything else to say except an inevitable future “I told you so” while praying that my loved ones are not harmed.
posted by Maarika at 11:17 AM on June 21, 2019 [8 favorites]
praying that my loved ones are not harmed.
Aye. It's hard for me to not to take this stuff personally while my spouse is immunosuppressed. I saw a car on my way to work the other day with two bumper stickers: "Pro Life" and "No Forced Vaccination". Fucking hell.
posted by rhamphorhynchus at 11:26 AM on June 21, 2019 [19 favorites]
Aye. It's hard for me to not to take this stuff personally while my spouse is immunosuppressed. I saw a car on my way to work the other day with two bumper stickers: "Pro Life" and "No Forced Vaccination". Fucking hell.
posted by rhamphorhynchus at 11:26 AM on June 21, 2019 [19 favorites]
Last week a 50-something-year-old friend of mine ended up in the hospital with chicken pox. Yesterday I found out I have no immunity to measles. My city currently has a measles outbreak, and I have antivaxxers in my family. I also have a pediatric infectious disease specialist in my family. I know so clearly which side I'm on -- SCIENCE! -- and am equally mad and depressed that idiots like my family member have put us all at risk.
posted by BlahLaLa at 12:02 PM on June 21, 2019 [8 favorites]
posted by BlahLaLa at 12:02 PM on June 21, 2019 [8 favorites]
A friend whose son is autistic put it well: if you'd rather your kid died of measles than lived with autism, something is seriously wrong with you.
I recently told an anti-vaxxer on Twitter "Do you think dying of preventable diseases is worse than being autistic? Tell an autistic person that and see where it gets you."
I shit you not, he responded. "Yes. Death is preferable." I was blown away.
posted by brundlefly at 12:08 PM on June 21, 2019 [20 favorites]
I recently told an anti-vaxxer on Twitter "Do you think dying of preventable diseases is worse than being autistic? Tell an autistic person that and see where it gets you."
I shit you not, he responded. "Yes. Death is preferable." I was blown away.
posted by brundlefly at 12:08 PM on June 21, 2019 [20 favorites]
This would be a great opportunity to boycott the Loews hotel chain in protest of their hosting this debacle.
posted by scruss at 12:25 PM on June 21, 2019 [9 favorites]
posted by scruss at 12:25 PM on June 21, 2019 [9 favorites]
brundlefly: I recently told an anti-vaxxer on Twitter "Do you think dying of preventable diseases is worse than being autistic? Tell an autistic person that and see where it gets you."
I shit you not, he responded. "Yes. Death is preferable." I was blown away.
They’re not afraid of the high-functioning formerly-known-as-Aspergers sort of Autism. They’re afraid of the low-functioning debilitating severe autism that requires care and support that the US healthcare system is ill-equipped to provide.
It’s no wonder that these parents fall prey to hucksters and quacks peddling all sorts of shit. They offer Hope and Answers where mainstream medicine doesn’t.
posted by dr_dank at 2:04 PM on June 21, 2019 [7 favorites]
I shit you not, he responded. "Yes. Death is preferable." I was blown away.
They’re not afraid of the high-functioning formerly-known-as-Aspergers sort of Autism. They’re afraid of the low-functioning debilitating severe autism that requires care and support that the US healthcare system is ill-equipped to provide.
It’s no wonder that these parents fall prey to hucksters and quacks peddling all sorts of shit. They offer Hope and Answers where mainstream medicine doesn’t.
posted by dr_dank at 2:04 PM on June 21, 2019 [7 favorites]
They're still saying it would be better for their kid to be dead than non-verbal. That is still the most hateful form of ablism imaginable.
posted by hydropsyche at 2:18 PM on June 21, 2019 [24 favorites]
posted by hydropsyche at 2:18 PM on June 21, 2019 [24 favorites]
That's one particular thing I hate about this movement is how it is feeding the further stigmatization of persons on the autism spectrum. I am high functioning formerly-known-as-Aspergers type. I have an IQ of 144, a master's degree, and juris doctorate. I've written books and I've been on drafting committees for city and county ballot measures. It's an intellectual disability, but it doesn't require medication, it just requires strategies for bypassing certain social scenarios. And yet whenever the topic comes up, suddenly a switch comes on in certain people's heads and they start treating me like I was a precocious child. I hate the fact that a mere lag in empathic acuity causes others to treat me as a faulknerian idiot man-child.
Anyways, ranting over. I also hate these people just for pure epidemiological reasons, for the fact that they're the stooges of Russian disinformationists, for the greed and the hucksterism, for their ties to the alt right. Anti-vaxxers dance merrily across the buttons of practices that enrage me.
posted by LeRoienJaune at 2:28 PM on June 21, 2019 [60 favorites]
Anyways, ranting over. I also hate these people just for pure epidemiological reasons, for the fact that they're the stooges of Russian disinformationists, for the greed and the hucksterism, for their ties to the alt right. Anti-vaxxers dance merrily across the buttons of practices that enrage me.
posted by LeRoienJaune at 2:28 PM on June 21, 2019 [60 favorites]
A few years ago when I was getting a year 7 class ready to go for their vaccinations. The conversation was the kind of nervous "how much does the needle hurt" and "maybe I can get out of this" type. A student of mine has autism, and he deadpanned at me "but what if I get autism again?" His delivery was perfect and it threw me out of serious teacher mode!
posted by freethefeet at 6:23 PM on June 21, 2019 [52 favorites]
posted by freethefeet at 6:23 PM on June 21, 2019 [52 favorites]
Internment camps along the US Southern border and these dummies are spending money to protect the children on fighting medicine.
I've discovered being anti-vax isn't something I can muster sympathy for.
posted by aspersioncast at 6:25 AM on June 22, 2019 [3 favorites]
I've discovered being anti-vax isn't something I can muster sympathy for.
posted by aspersioncast at 6:25 AM on June 22, 2019 [3 favorites]
My friends' baby, who was too young to vaccinate, got measles at Disneyland a few years back. It was utterly terrifying. They're great people, one of them is a nurse, and were... not happy, but invested in using the news coverage they got to push the message that vaccination is important. At the time I hadn't met their kid, but just watching this unfold over facebook, from "huh, something is wrong", to "oh fuck is this the measles?" to "yes measles oh shit" to them having to call everyone they could think of that they'd been near since he was exposed and the panic of trying to get him through a disease he should have been completely safe from - it was awful. Having to watch them fear for their son's life was a nightmare for all of us watching, and was obviously pure hell for them.
Their kid is fine now, but the panic they went through isn't something I'd wish on anyone. I live in fear of the measles personally because my immune system is compromised, and until recently it was also suppressed. I'm up to date on my shots, but I can't know if that will be enough and now there are all these assholes out there - who had their shots - refusing to vaccinate and putting all of us in danger like that's an okay thing to do. I was very happy to see that New York is no longer allowing religious exemptions for measles shots, but I hate that we had to have multiple outbreaks to get to this point.
posted by bile and syntax at 9:10 AM on June 22, 2019 [8 favorites]
Their kid is fine now, but the panic they went through isn't something I'd wish on anyone. I live in fear of the measles personally because my immune system is compromised, and until recently it was also suppressed. I'm up to date on my shots, but I can't know if that will be enough and now there are all these assholes out there - who had their shots - refusing to vaccinate and putting all of us in danger like that's an okay thing to do. I was very happy to see that New York is no longer allowing religious exemptions for measles shots, but I hate that we had to have multiple outbreaks to get to this point.
posted by bile and syntax at 9:10 AM on June 22, 2019 [8 favorites]
brundlefly: I recently told an anti-vaxxer on Twitter "Do you think dying of preventable diseases is worse than being autistic? Tell an autistic person that and see where it gets you."
I shit you not, he responded. "Yes. Death is preferable." I was blown away.
In fairness having a severely disabled kid in the US generally leads to divorce and one parent, usually the woman, living the rest of their life in poverty while simultaneously losing connection with their other kids, who are either neglected or cut contact to avoid becoming their siblings caretaker, all the whole knowing no one will take care of their adult child after they die. I'm old enough to have seen this happen many, many times. I do not know what I would do in that situation and it's only getting worse as government assistance options dwindle. People are utterly desperate and I think you need to keep that in context. I have a half dozen friends who will straight up tell you they wish they'd never had kids. Which leads to a whole other discussion about older patents having kids but anyway.
It's obviously a horrible thing to say but it comes from a place of desperation more often than not. These people are crying out for help, I disagree with their anti science stance but I can see that and that they need support and vote accordingly.
posted by fshgrl at 12:23 PM on June 22, 2019 [2 favorites]
I shit you not, he responded. "Yes. Death is preferable." I was blown away.
In fairness having a severely disabled kid in the US generally leads to divorce and one parent, usually the woman, living the rest of their life in poverty while simultaneously losing connection with their other kids, who are either neglected or cut contact to avoid becoming their siblings caretaker, all the whole knowing no one will take care of their adult child after they die. I'm old enough to have seen this happen many, many times. I do not know what I would do in that situation and it's only getting worse as government assistance options dwindle. People are utterly desperate and I think you need to keep that in context. I have a half dozen friends who will straight up tell you they wish they'd never had kids. Which leads to a whole other discussion about older patents having kids but anyway.
It's obviously a horrible thing to say but it comes from a place of desperation more often than not. These people are crying out for help, I disagree with their anti science stance but I can see that and that they need support and vote accordingly.
posted by fshgrl at 12:23 PM on June 22, 2019 [2 favorites]
The framing of disabled people as burdens is moving toward some very ableist assumptions and problems and it would be nice if we could pull back from that.
posted by lazuli at 12:31 PM on June 22, 2019 [9 favorites]
posted by lazuli at 12:31 PM on June 22, 2019 [9 favorites]
I work in disability advocacy and see a lot of people with severe disabilities who are seriously underserved, what it does to their families, and the horrifying ableism all around us.
Bringing back measles, polio, and other horrors from the past is in no way a responsible thing to do, if only because these diseases are known to cause lifelong disabilities. Even if vaccines did have a link to developmental disabilities, the option wouldn't be between one disability versus the possibility of a fairly quick death, but between two sets of risks for lifelong disability, one with the possibility of death attached.
posted by bile and syntax at 12:57 PM on June 22, 2019 [10 favorites]
Bringing back measles, polio, and other horrors from the past is in no way a responsible thing to do, if only because these diseases are known to cause lifelong disabilities. Even if vaccines did have a link to developmental disabilities, the option wouldn't be between one disability versus the possibility of a fairly quick death, but between two sets of risks for lifelong disability, one with the possibility of death attached.
posted by bile and syntax at 12:57 PM on June 22, 2019 [10 favorites]
Obviously vaccinations have nothing to do with autism. But the reason these conferences and groups exist is that they feel profoundly abandoned by a society that basically says "your bad, shouldn't have had kids" or gives them a little speech about how awful they are as parents and human beings.
Its not ablest to say that you wouldn't wish a profound disability in the US on your worst enemy much less your child. It's the truth. I have friend right now trying to find a permanent placement for a teen boy and it's literally impossible. They are having to support two households as he can't be in the family home and they will probably have to abandon parental rights to place him. Everyone has treated them like dirt through this entire mess from social workers to medical staff and there has been a lot of tears and "I wish we'd never...."s.
posted by fshgrl at 7:43 PM on June 23, 2019 [5 favorites]
Its not ablest to say that you wouldn't wish a profound disability in the US on your worst enemy much less your child. It's the truth. I have friend right now trying to find a permanent placement for a teen boy and it's literally impossible. They are having to support two households as he can't be in the family home and they will probably have to abandon parental rights to place him. Everyone has treated them like dirt through this entire mess from social workers to medical staff and there has been a lot of tears and "I wish we'd never...."s.
posted by fshgrl at 7:43 PM on June 23, 2019 [5 favorites]
Its not ablest to say that you wouldn't wish a profound disability in the US on your worst enemy much less your child
No, actually, that's extremely ableist. Please rethink your assumptions, and please recenter disabled people rather than caretakers of disabled people in any future comments.
posted by lazuli at 8:41 PM on June 23, 2019 [6 favorites]
No, actually, that's extremely ableist. Please rethink your assumptions, and please recenter disabled people rather than caretakers of disabled people in any future comments.
posted by lazuli at 8:41 PM on June 23, 2019 [6 favorites]
I know we are supposed to pretend that caring for severely disabled people is never a burden and that the suffering of the caretakers is totally irrelevant and only the suffering of the disabled person matters, but they both in fact matter.
posted by tavella at 12:39 AM on June 24, 2019 [7 favorites]
posted by tavella at 12:39 AM on June 24, 2019 [7 favorites]
Its not ablest to say that you wouldn't wish a profound disability in the US on your worst enemy much less your child
No. This is the essence of ableism, the idea that living with a severe disability means that a person's life cannot be worthwhile, and is worse than death. People with severe disabilities can have good lives, they can be happy, have friends, have activities, be out in the community making a difference. As a society we need to do better in terms of disability accessibility on all levels, including creating and funding programs and making care affordable, but to say that once you cross a line into a "profound" disability your life is no longer worthwhile is not "the truth". It's just ableism.
posted by bile and syntax at 5:17 AM on June 24, 2019 [6 favorites]
No. This is the essence of ableism, the idea that living with a severe disability means that a person's life cannot be worthwhile, and is worse than death. People with severe disabilities can have good lives, they can be happy, have friends, have activities, be out in the community making a difference. As a society we need to do better in terms of disability accessibility on all levels, including creating and funding programs and making care affordable, but to say that once you cross a line into a "profound" disability your life is no longer worthwhile is not "the truth". It's just ableism.
posted by bile and syntax at 5:17 AM on June 24, 2019 [6 favorites]
I know we are supposed to pretend that caring for severely disabled people is never a burden and that the suffering of the caretakers is totally irrelevant and only the suffering of the disabled person matters
I said nothing of the sort, and I believe nothing of the sort. We as a society suck at supporting disabled people, and in creating systems that help them thrive. Which means much of that work falls on disabled people and on caregivers. But that does not mean that disabled people themselves are "burdens"; it means that society is unjust. We should not be placing the blame for an unjust society on the victims of that injustice, or justifying societal or caregiver ableism by claiming those disabled lives are not worth living.
Caregivers of disabled people often abuse and murder disabled people, and their crimes are somehow considered justified. Propping up the framework of the suffering caregiver and placing the blame for that suffering on the disabled person, rather than society, creates real identifiable harm and danger for disabled people.
posted by lazuli at 7:58 AM on June 24, 2019 [7 favorites]
I said nothing of the sort, and I believe nothing of the sort. We as a society suck at supporting disabled people, and in creating systems that help them thrive. Which means much of that work falls on disabled people and on caregivers. But that does not mean that disabled people themselves are "burdens"; it means that society is unjust. We should not be placing the blame for an unjust society on the victims of that injustice, or justifying societal or caregiver ableism by claiming those disabled lives are not worth living.
Caregivers of disabled people often abuse and murder disabled people, and their crimes are somehow considered justified. Propping up the framework of the suffering caregiver and placing the blame for that suffering on the disabled person, rather than society, creates real identifiable harm and danger for disabled people.
posted by lazuli at 7:58 AM on June 24, 2019 [7 favorites]
Mod note: Hey, we've hit a point where everyone involved has extremely high personal stakes, and everyone needs to step back, take a breath, and use "I" statements and talk about themselves, not generalize out to the other people who are right here and don't necessarily agree. Thanks.
posted by restless_nomad (staff) at 11:59 AM on June 24, 2019 [2 favorites]
posted by restless_nomad (staff) at 11:59 AM on June 24, 2019 [2 favorites]
I'm immunocompromised and was born in the UK when there was only one dose give in infant vaccinations, in case anyone else reading this was born between 1970 and 1990, you can get another vaccination with no issue (Thursday for me since France has the highest measles cases in Europe thanks to French anti-vaxxers).
The framing of ex-vaccinators horribly reminds me of ex-gay.
posted by ellieBOA at 3:59 AM on June 25, 2019
The framing of ex-vaccinators horribly reminds me of ex-gay.
posted by ellieBOA at 3:59 AM on June 25, 2019
On the off chance anyone reading is an expat in France, to get vaccinated here, you have to go to the doctor to get a prescription for the vaccine (one appointment), then go to the pharmacy to collect it, store it in the fridge, then go back to the doctor to be vaccinated (second appointment). I will be taking mine in a cool bag with an ice pack since it is forecast to be 39c/102c - feels like 45c/113f!
posted by ellieBOA at 4:06 AM on June 25, 2019 [2 favorites]
posted by ellieBOA at 4:06 AM on June 25, 2019 [2 favorites]
Wow, that seems really inefficient and dangerous, I'd think that there could be problems with people storing it incorrectly. How did it arise, do you know?
posted by tavella at 9:49 AM on June 25, 2019 [1 favorite]
posted by tavella at 9:49 AM on June 25, 2019 [1 favorite]
No idea! I just found out when I turned up for the flu vaccination last winter without the vaccine.
posted by ellieBOA at 12:00 PM on June 25, 2019
posted by ellieBOA at 12:00 PM on June 25, 2019
What the Measles Epidemic Really Says About America: The return of a vanquished disease reflects historical amnesia, declining faith in institutions, and a troubling lack of concern for the public good.
posted by homunculus at 7:02 PM on July 8, 2019 [3 favorites]
posted by homunculus at 7:02 PM on July 8, 2019 [3 favorites]
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posted by Emmy Noether at 5:32 AM on June 21, 2019 [4 favorites]