[HN Gopher] Decades after polio, Martha is among the last to sti...
___________________________________________________________________
Decades after polio, Martha is among the last to still rely on an
iron lung
Author : pseudolus
Score : 177 points
Date : 2021-10-26 11:26 UTC (1 days ago)
(HTM) web link (www.npr.org)
(TXT) w3m dump (www.npr.org)
| fumblebee wrote:
| That cookies landing page is a crime against humanity. When will
| this problem be solved!
| Zababa wrote:
| When websites stop trying to gather data at every opportunity.
| a1369209993 wrote:
| When we start punishing 'white-collar' crimes against humanity
| such as lobbying, censorship, and - as in this case -
| espionage.
| watt wrote:
| When landing pages stop trying to send cookies to visitors who
| are there only to look at that one page.
| jasonpeacock wrote:
| New collars are already on their way:
|
| https://twitter.com/RealSexyCyborg/status/145289814620013363...
| corndoge wrote:
| The amount of insinuations, accusations and anti-
| American/tech/white/male/journalism sentiments packed into such
| a small thread is incredible.
|
| It's a news story about a health patient, yet Naomi seems to
| expect NPR to act as Martha's personal insurer and care
| advocate. Would it have been better if NPR didn't publish it at
| all? Then Naomi would never have been given the chance to
| virtue signal for exposure. Lose-lose.
| dralley wrote:
| Naomi Wu has had poor experiences with western news outlets -
| Vice news outed her against her will in a piece they wrote on
| her, and she lives in a country that doesn't have an
| especially liberal attitude towards homosexuality. So there
| is understandably some salt on that basis, but also...
|
| In this case plenty of other news outlets _have_ covered her
| in their articles about Martha:
| https://www.wired.co.uk/article/iron-lung-maker-community
|
| As far as "tech/white/male", you really only have to read the
| comments people post in any thread about her on Reddit to
| figure that one out. I can't even imagine what her inbox must
| look like.
| nend wrote:
| That article is from a previous donation years ago. Naomi
| herself says her recent donation wasn't used[1].
|
| Is NPR obligated to mention all failed attempts to acquire
| new collars? It seems unlikely they excluded this
| information because of Naomi's gender or race.
|
| It's great that Naomi donated successfully before and has
| tried to again, but as you noted she's received plenty of
| positive media from her donations already.
|
| [1] - "I just could not get anyone to visit her and do
| final fitting and troubleshooting on the collars I had
| manufactured for her." - https://twitter.com/RealSexyCyborg
| /status/145289590785527398...
| junon wrote:
| Especially since for anyone reading the article it's clear
| why she's (rightfully) annoyed.
|
| > She has only a handful of collars left. "I really am
| desperate," she says. "That's the most scary thing in my
| life right now -- is not finding anybody that can make
| those collars."
|
| Naomi does a lot of interesting work and is snubbed quite a
| lot. She made it quite public that this was happening and
| yet NPR _still_ snubbed her.
| Chris2048 wrote:
| Did Martha herself not reach out to Naomi? It would seem
| to make more sense to me than NPR doing so..
| morelisp wrote:
| I mean there's also plenty of other options, like the
| parts didn't fundamentally work and it's easier to just
| forget about it and write a new article than risk another
| media blowup by bringing a Twitter personality into a
| story that's not really about her?
| junon wrote:
| That makes absolutely zero sense, though. She's also not
| a twitter personality. She's a full-blown engineer with a
| very popular Youtube channel and following and has done
| these sorts of things quite often.
| morelisp wrote:
| Whatever else she _also_ is, she 's absolutely a social
| media personality.
|
| > full-blown engineer
|
| This, I seriously doubt. As far as I know she's very deep
| in the DIY/maker scene, but I don't think she's been
| flashing around a PE cert. Or maybe we have a difference
| of opinion what a "full-blown engineer" is.
| brokensegue wrote:
| i'm an engineer and i'm not even sure what "PE cert"
| stands for. certification means very litte.
| lapetitejort wrote:
| A Professional Engineer certification can mean "We trust
| you to work on things where human lives may be at stake".
| Gatekeeping engineers use this to exclude everyone else.
| If your screw-up doesn't cost human lives then you're not
| a _real_ engineer.
| junon wrote:
| > If your screw-up doesn't cost human lives then you're
| not a real engineer.
|
| This is such a ridiculous, asinine, and outright _wrong_
| assertion that it warrants no reasoned response.
| sho_hn wrote:
| I'm fairly sure the post you're replying you was
| interpretative-facetious.
| vangelis wrote:
| There's a lot of engineers out there who wouldn't count
| as engineers by that metric.
| sho_hn wrote:
| Naomi Wu is not a US citizen (the English name is a
| pseudonym). The NSPE is a US-only entity.
| masklinn wrote:
| That makes absolutely no sense, Wu is in china so _some_
| back and forth in order to get the collars to fit
| correctly is to be expected. Following which you 're done
| because the chinese shop can make the collars to order
| whenever that's needed.
|
| > bringing a Twitter personality into a story that's not
| really about her?
|
| Wu was _already involved in this_. Per her comments she
| 'd already sent packages of collars to be tested and
| altered / fitted.
|
| Hell, mentioning that there was a volunteer / grassroots
| effort to produce new collars would have been more honest
| than the article going "collars where?"
| morelisp wrote:
| It's a light human interest story, not a comprehensive
| international assessment of iron lungs parts suppliers or
| formal inventory and provenance check of Martha's stock.
| mrighele wrote:
| She has the right to be annoyed with those that were
| supposed to deliver and test the collars, not with Martha
| Lillard or NPR.
|
| From the point of view of M.L., she is maybe one of
| several that promised to help but could do it (not a
| fault of Naomi Wu of course, but of those that first
| contacted her for help and then left things unfinished),
| so it doesn't surprise me that she was not mentioned.
| junon wrote:
| NPR asserted in their article that help was few and far
| in between when this wasn't the case. Naomi has certainly
| gone above and beyond in attempting to help. It should be
| noted that the difficulty is not in finding help, but in
| the logistics. It reads very much like a plea to emotion,
| how NPR worded it.
| sho_hn wrote:
| Beyond the outlets, I think it's useful to be familiar with
| this episode: https://www.bunniestudios.com/blog/?p=5046
|
| Dale Dougherty later posted an open letter in apology.
| fxtentacle wrote:
| Her handle is called "RealSexyCyborg" and she's reviewing
| gaming tech in a bikini. I'm pretty sure it was a
| deliberate trade-off on her side to present herself like
| this.
|
| EDIT: This is my reply to the reply to "The amount of [..]
| anti-[..]white/male [..] is incredible."
| vorpalhex wrote:
| Because real hackers are unwashed, unshaved and live in
| hoodies?
|
| As a community we are not really a suit and tie sort of
| affair. Whether that means a bikini, a nice cotton henley
| or your favorite cyberpunk cosplay - who cares?
| fxtentacle wrote:
| The comment that I replied to said that she has a valid
| point being anti-male because she receives so much
| unwanted attention. And my reply is that I believe the
| sexualized attention isn't unwanted but instead it's part
| of her marketing strategy which includes - among other
| things - the "sexy cyborg" branding and 18+ videos.
|
| In a similar vein, if I wanted to make a YouTube channel
| that appeals to true hackers, I might stop shaving and
| showering for a few days and wear the hoodie. That sounds
| like a great marketing strategy to stand out from the
| boring suit & tie crowd ;)
|
| EDIT: Marketing agencies already beat me to it:
|
| https://www.youtube.com/watch?v=FcLsNOMqyD8
|
| https://www.youtube.com/watch?v=9aTGB1KFgII
|
| https://www.youtube.com/watch?v=8M71fnJNNeE
| vorpalhex wrote:
| Wu has been clear that her reasons for her dress style is
| her interest in women, not attracting the male gaze.
|
| One of the traditional hacker values is personal agency -
| doing things because you like them, not to fit in or
| sell.
|
| In general we need to take people at their word and not
| supply our own beliefs. We diminish ourselves when we
| minimize the agency of others.
| whimsicalism wrote:
| Explain what you mean. I'm not able to connect the
| threads unless you're just making a bad pass at
| discrediting her.
| Jiro wrote:
| Having that name and wearing the bikini means that much
| of her popularity will be because of sex appeal, with
| relatively little being because of the merits of her
| actions or her writings. As this is Hacker News, not
| Virtual Idol News, this absolutely means that anything
| about her that _is_ related to her actions or her
| writings should be viewed with the utmost skepticism.
|
| Also, calling herself sexy and wearing a bikini is
| specifically aimed at males, so no defense of her should
| include the phrase "white male". Of course most people
| paying attention to anything she does are male--she's
| doing that deliberately!
|
| Finally, the Halo Effect is a thing.
| https://en.wikipedia.org/wiki/Halo_effect
| 2muchcoffeeman wrote:
| She's explained many times how the gay and lesbian scene
| that she identifies with works in parts of Asia. I think
| she's sincere as she's mentioned her relationships on
| Twitter. She's not appealing to males. She's appealing to
| specific types of lesbians.
|
| I think this part of her complaint with western media is
| legit. They all just assume that she's doing it for the
| views. Ignore the gay and lesbian scene in Asia entirely
| to come up with a fake narrative. Completely ignore that
| she has done some good work just because of the way she
| looks. Then go on and on about inclusivity and LGBT
| rights.
|
| Even Adam Savage's Tested.com seems to have snubbed her.
| They requested a few CR-30s be sent over for review but
| then <some shenanigans> And the review never came and I
| guess they never sent them back to her.
| sho_hn wrote:
| > Having that name and wearing the bikini means that much
| of her popularity will be because of sex appeal, with
| relatively little being because of the merits of her
| actions or her writings.
|
| I think that honestly underestimates the amount of work
| that goes into being a consistently successful tech-
| themed content creator: Wearing a bikini isn't enough to
| brave competition and short-lived attention spans in that
| space. Being attractive helps in media, for sure, but you
| can't go on without putting work into the essential
| content for very long.
| klyrs wrote:
| > Also, calling herself sexy and wearing a bikini is
| specifically aimed at males
|
| Women who are attracted to women exist. It's possible to
| think that yourself is sexy without desiring external
| attention. What you're doing here is projecting and
| victim-blaming.
| fxtentacle wrote:
| GP: "The amount of [..] anti-[..]white/male sentiments
| packed into such a small thread is incredible"
|
| P: "you really only have to read the comments in pretty
| much every thread about her to figure that one out. I
| can't even imagine what her inbox must look like."
|
| And to P I'd like to reply that I agree with GP: It
| appears to me that she has voluntarily joined fighting
| the anti- white/male fight.
| ramadan_steve wrote:
| "anti-American/tech/white/male/journalism sentiment". That's
| a lot to take out of a story about a woman with the polio.
| I'm sad what's happening to this site.
| junon wrote:
| > yet Naomi seems to expect NPR to act as Martha's personal
| insurer and care advocate.
|
| No. She expects a reputable news outlet to fact check their
| own story, especially since they covered most of the same
| information the Wired article did _4 years ago_ - which,
| naturally, mentioned Wu.
| nend wrote:
| Fact check doesn't seem to the right phrase here. Naomi
| donated collars years ago. Each collar lasts "a few
| months". Martha has a "handful left". Martha hasn't been
| able to find additional collars. What facts did NPR get
| wrong in the article?
|
| There could be all sorts of reasons NPR didn't mention
| Naomi. How did Martha get the collars before Naomi's
| donation? How many years of collar donations/purchases is
| NPR obligated to mention in their article? Is there anyone
| else outraged they didn't get mentioned for providing
| collars years ago?
| kevmo wrote:
| I like NPR as much as the next person, but it is often used
| as a propaganda tool, so I think it's valid to question the
| underlying reasons behind publishing stories and the slants
| they take.
|
| And yeah, it sounds like NPR should have picked up on the
| maker community here. Articles which precede this one by
| years bring up Naomi Wu.
| https://www.wired.co.uk/article/iron-lung-maker-community
|
| Given this, I think it's fair for Ms. Wu to have a hot take
| on this.
|
| Highly recommend reading Propaganda by Ed Bernays. I saw it
| recommended on HN years ago, so I bought and read it -- it
| really helped make me a smarter consumer of news.
| Pxtl wrote:
| Naomi Wu _really_ hates western journalists and tech-bros,
| and justifiably so. She 's been doxxed, accused of being fake
| (they think her partner does all the work and she's just his
| model/actress), etc.
|
| So yeah, she has a humongous chip on her shoulder, and maybe
| she gets carried away with that anger, but the chip on her
| shoulder comes from some legitimate grievances.
|
| Regardless, she has a lot of respect in the maker space
| because she's one of the few people who says "oh yeah, we can
| jump in and come up with help for this medical/prosthetic
| problem" and doesn't half-ass it. She's very specific about
| that - this is one of those cases where Minimum Viable
| Product is unacceptable, these items need to stand up to real
| life and 24/7 contact with human skin.
| vadfa wrote:
| Mentally ill person yelling racial slurs on a street corner,
| news at 11.
| MattGaiser wrote:
| I am curious how NPR would even have known about her beyond
| trawling Twitter for anything related to Martha.
| kevmo wrote:
| Reviewing other comments, it looks like NPR either didn't
| do a google search or decided to leave out a lot of
| relevant parts of this story.
|
| I think it's fair to discuss NPR as propaganda here.
| morelisp wrote:
| Propaganda for what, though, in this case?
| kevmo wrote:
| I am inclined to agree with Ms. Wu's assessment:
|
| > And of course- when _someone_ does something, but they
| aren 't the right kind of _someone_ let 's pretend her
| name did not come up at the top of the search when you
| fact-checked this story right @NPRHealth ? Just say you
| want a straight white American tech bro to do it.
|
| NPR is rife with bias, if you know how to look for it. I
| recommend reading Propaganda by Ed Bernays & then
| thinking about why the people who make huge donations to
| NPR make those donations (IMO, it's because NPR largely
| exists to reinforce the existing social structure).
| toomuchtodo wrote:
| > IMO, it's because NPR largely exists to reinforce the
| existing social structure
|
| Can you expound on this? I have come to a similar
| observation, but would be interested in hearing what
| specifically they're reinforcing.
| mikestew wrote:
| _NPR is rife with bias, if you know how to look for it._
|
| At which point you're going to have a serious
| confirmation bias problem. How would I know that I know
| how to look for it? Easy: I found some.
|
| "If only you'd open your eyes and look for _the truth_! "
| is kinda how that comes across to me.
| morelisp wrote:
| You're making sweeping general claims about the media
| which I agree with, but I'm asking _specifically about
| this story._ To the extent I would classify NPR as
| propaganda, it 's (currently) for a particular half-
| progressive/half-third-way American liberalism that would
| love to have a story about a scrappy DIY global supply
| chain saving someone in Oklahoma.
|
| ETA (since I'm rate-limited...):
|
| > Do tell us more about NPR's liberal bias.
|
| Sure. By telling these kind of fables about how global
| capitalism is actually good for everybody, they're trying
| to prevent growing class consciousness that would
| eventually force fundamental, revolutionary change to how
| we allocate resources.
|
| Oh wait, you thought I was to the _right_ of NPR? Sorry,
| no, that probability distribution is barely
| distinguishable from Nazism at this point. Also no one to
| the right of NPR would ever use the term "third-way" in
| criticism of it.
| setpatchaddress wrote:
| Ah, that explains your attitude here. Do tell us more
| about NPR's liberal bias.
| Loughla wrote:
| >Sure. By telling these kind of fables about how global
| capitalism is actually good for everybody, they're trying
| to prevent growing class consciousness that would
| eventually force fundamental, revolutionary change to how
| we allocate resources.
|
| YES. I love NPR as a news source, because of the oddball
| stories they cover. But they are solidly, solidly in the
| 'bootlicker' camp when it comes to how great and
| exceptional international businesses are at solving
| humanities problems.
| themaninthedark wrote:
| Youtube https://youtu.be/4VKZTmTP7oY
|
| Wired https://www.wired.co.uk/article/iron-lung-maker-
| community
| junon wrote:
| And the Wired article is the _first result_ on Google for
| "martha iron lung parts".
|
| Even more, Martha herself commented on her video: https:/
| /www.youtube.com/watch?v=4VKZTmTP7oY&lc=UgyYG8WsY8fN4...
| dragonwriter wrote:
| > It's a news story about a health patient, yet Naomi seems
| to expect NPR to act as Martha's personal insurer and care
| advocate.
|
| No I think Wu just expects [0] NPR not to ignore relevant
| facts to construct a misleading narrative.
|
| > Then Naomi would never have been given the chance to virtue
| signal for exposure.
|
| Naomi Wu is hardly lacking in exposure opportunities or the
| ability to exploit them, so even if the basic false dichotomy
| you propose wasn't false, it wouldn't really be lose-lose for
| NPR and Wu. (NPR and _Martha_ maybe, since the exposure, even
| starting in the misleading form NPR presented it, does
| probably make it more likely that her issue gets resolved,
| but that 's where the false dilemma comes into play, since
| the story didn't actually have to be misleading.)
|
| [0] in the normative, but emphatically not the predictive,
| sense of the word.
| rootusrootus wrote:
| That twitter thread sure doesn't present a good look for NPR.
| benchaney wrote:
| I disagree. That Twitter thread is a terrible look for the
| people participating, but NPR comes out of it looking fine.
| They reported the situation from Martha's perspective. If
| Martha is worried about being able to find collars why would
| it matter that some completely unrelated people on Twitter
| think they already solved the problem? Makes no sense.
| StevePerkins wrote:
| I don't think that Twitter thread presents a good look for
| anyone.
|
| There is no timeline or context given here. So I don't know
| who this person is, and what direct interaction they have or
| haven't had with person in that article. All I can see is
| that this is a YouTuber, with ~2k Twitter followers and the
| tagline "It's all about merit until merit has tits". Who is
| "working on it", but hasn't shipped the parts yet. And who
| feels that NPR (who probably doesn't know she exists)
| deliberately cut her out because she's "not a straight white
| American tech bro".
|
| To me, that thread is Twitter in a nutshell. Off the charts
| narcism and self-promotion, revolving around race/gender-
| charged drama. There may be some information that I'm missing
| here. But if you're starting from a place of _NPR_ being too
| right-wing or bigoted, then I 've seen enough.
| JPKab wrote:
| You nailed it. Twitter is filled with a lot of interesting
| content, but the dominant "trending" topics are basically
| navel-gazing activists masquerading as journalists
| obsessing about their own identity (if they are in a
| favored group) or desperately using some sacred cow
| identity group as a tool to gain status with their peers.
|
| I deleted my account after I simply asked a question one
| day in a thread with a prominent startup founder who
| happened to be a Black woman. Someone else on her thread
| had stated that she was worried about encouraging her
| daughter to learn to code because she felt that nobody
| would hire her "due to the extreme racism that was
| obviously prevalent in tech." I simply stated that my
| company was trying hard to hire folks like her daughter,
| and asked what we could do to make people like her feel
| welcome and understand that it wasn't a problem at our
| company. Then the veil was pulled back on the performance.
| The questioner didn't really have a question. She simply
| posed it as a performance, and then I was mobbed with
| statements telling me that I needed to "Listen and let
| Black women speak." These narcissists aren't interested in
| solutions, only in gaining status in their silly, secular
| imitation of evangelical fundamentalist churches. Replace
| "Satan" with "toxic whiteness" and you have Dana Carvey's
| church lady on SNL in the 90's.
| [deleted]
| Cpoll wrote:
| > ~2k Twitter followers
|
| I think you read this wrong. She's follow _ing_ ~2k people,
| but she has 185.7K follow _ers_ (and 1.46M subscribers on
| Youtube).
|
| > There may be some information that I'm missing here.
|
| Other posters have provided a bit more information that
| might change your interpretation of why Naomi tweeted this:
| https://news.ycombinator.com/item?id=29015822
|
| > But if you're starting from a place of NPR being too
| right-wing or bigoted, then I've seen enough.
|
| I agree with your assessment of Twitter being mostly self-
| promotion and race/gender-charged drama, but no-one said
| "right-wing." I don't think an accusation that any media
| outlet cuts out facts that don't fit their narrative can be
| dismissed out of hand these days, unfortunately. I don't
| have a strong opinion about NPR, but I can see how Naomi
| _might_ not fit in the narratives they try to push. But I
| acknowledge that I'm being a bit intellectually dishonest,
| I'm not bringing any evidence to bear here either.
| themaninthedark wrote:
| Twitter is a shifty way to present information and to
| talk.I looked around and found out that she sent some
| collars in 2019. She also made a YouTube video of what she
| was doing at the time https://youtu.be/4VKZTmTP7oY the
| video shows up if you search 'Martha Iron Lung' so it's not
| like it is hidden...
|
| A 2017 Wired article https://www.wired.co.uk/article/iron-
| lung-maker-community states that Naomi was spearheading the
| effort then.
| SQueeeeeL wrote:
| I thought reporters weren't supposed to interfere? If the
| patient can't get help, that's still a story...
| spacehome wrote:
| You're thinking of the Federation.
| gambiting wrote:
| This isn't national geographic and the article isn't about
| wildlife. Reporters have absolutely no such restriction on
| them, implied or otherwise.
| Zircom wrote:
| And in the same vein they also have no obligation to
| solve her problems for her just because they choose to
| write a story on her.
| MattGaiser wrote:
| > She has only a handful of collars left. "I really am
| desperate," she says. "That's the most scary thing in my life
| right now -- is not finding anybody that can make those
| collars."
|
| How do you fact check whether someone can find something?
|
| Their inability to find something doesn't mean it doesn't
| exist. It just means that she personally can't find them.
|
| And the collars didn't necessarily work either. They were
| shipped, not installed/tested. So the problem doesn't seem to
| have been solved.
| aeyes wrote:
| > And the collars didn't necessarily work either. They were
| shipped, not installed/tested.
|
| Are you sure about that? Look at the pinned comment on the
| original video from 2 years ago:
| https://www.youtube.com/watch?v=4VKZTmTP7oY
| masklinn wrote:
| > How do you fact check whether someone can find something?
|
| Looking at the top google hits and previous stories on your
| subject[0] seems like the bare minimum fact checking to do?
|
| > And the collars didn't necessarily work either. They were
| shipped, not installed/tested. So the problem doesn't seem
| to have been solved.
|
| Seems pretty logical that they'd have to be refined given
| they're made and shipped from china with no access to the
| iron lung or ability to travel back and forth personally.
| That's something the NPR journo could actually have
| assisted with.
|
| [0] https://www.wired.co.uk/article/iron-lung-maker-
| community
| HelloMcFly wrote:
| > That's something the NPR journo could actually have
| assisted with.
|
| That's not the job of the journalist! Are we to expect
| our journalists to solve the problems they report on?
| Should every story also turn the journalist into an
| advocate - be it legal, healthcare, employment, etc. -
| that works on their behalf?
|
| I think there's room for critique here though the
| "assumption of bad faith" runs rampant in this discourse
| already. Yet critiquing the reporter for not acting as
| their personal local news network "Problem Solvers"
| segment isn't the real issue here.
| grumple wrote:
| The textilist seems to be accusing NPR of not mentioning her,
| but Martha herself said she couldn't find anyone to make
| them. Was @RealSexyCyborg in contact with NPR? Or Martha? If
| anything, it seems the article itself is meant to encourage
| someone to provide the help that @RealSexyCyborg admits she
| needed someone else to do. How many others were contacted by
| Martha but couldn't produce the product at the end? Does each
| require an explicit mention?
|
| Then the accusation that this effort was omitted because she
| wasn't a white tech bro is out of left field and frankly,
| very unlikely. NPR regularly goes out of its way to provide
| viewpoints and credit well outside the "white tech bro"
| sphere.
| themaninthedark wrote:
| I don't know what research was done but it looks like
| @RealSexyCyborg had made some and shipped them in 2019...
| as well as making a YouTube video about it.
|
| Seeing as this is a 2021 story, either Martha did not
| receive the parts, the parts needed a revision or they did
| no research.
|
| If the parts needed a revision, you would expect the story
| to say something like 'an entrepreneur has been working
| with Martha to create replacements but they are having
| trouble with final fitment.'
|
| The article: She has only a handful of collars left. "I
| really am desperate," she says. "That's the most scary
| thing in my life right now -- is not finding anybody that
| can make those collars."
|
| Makes it sound like noone has tried to do anything. So that
| leaves someone who has tried to help with the feeling that
| they are being ignored either by malicious or incompetent.
| rmason wrote:
| It may seem strange for younger HN readers to see an iron lung.
| When I was growing up they were common. I can remember going to
| the Dayton Hamvention, the annual largest gathering of ham radio
| operators, and seeing a couple dozen folks in iron lungs being
| wheeled past the exhibits. There was no disease more terrifying
| to parents than polio.
|
| I was so young I don't remember getting the shot. My late father
| said the polio vaccine was right up there with going to the moon
| for scientific accomplishments in his lifetime.
| MBCook wrote:
| I saw one in person at a medical museum a few years ago.
| Terrifying device when you know the history behind it.
|
| I'm way too young for all this stuff first hand, but I've seen
| the pictures of polio wards and documentaries about how
| bad/scary it was. Glad I missed it.
| technothrasher wrote:
| "Dayton Hamvention"
|
| Ah, now you're making me nostalgic for those childhood trips to
| the now demolished Hara Arena with my dad.
| spion wrote:
| Polio is one of those diseases that remind me we're not really
| taking SARS-2 seriously enough.
|
| From Wikipedia :
|
| > Up to 70 percent of those infected have no symptoms. Another 25
| percent of people have minor symptoms such as fever and a sore
| throat, and up to 5 percent have headache, neck stiffness, and
| pains in the arms and legs. These people are usually back to
| normal within one or two weeks. Years after recovery, post-polio
| syndrome may occur, with a slow development of muscle weakness
| similar to that which the person had during the initial
| infection.
|
| SARS-2 binds to ACE2 which is present everywhere in the body [1].
| Loss of smell might apparently be a nervous system invasion. [2]
| Brain scans post COVID show brain matter reduction. [3] REM sleep
| seems to be disturbed in 4 of 11 long covid patients. [4]
|
| We've stopped taking this thing seriously with potentially
| disastrous consequences
|
| [1]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7167720/
|
| [2]: https://www.nature.com/articles/s41593-020-00758-5
|
| [3]:
| https://www.medrxiv.org/content/10.1101/2021.06.11.21258690v...
| and https://www.medicalnewstoday.com/articles/covid-19-may-
| reduc...
|
| [4]: https://pubmed.ncbi.nlm.nih.gov/33588262/
| bserge wrote:
| One can only hope. Imagine if 3 years from now all the
| antivaxxers died just like they said the vaccinated would. A
| blessing upon human society. Yeah, yeah, deaths are sad. But
| let's be honest, the living imbeciles are worse.
|
| And yeah, flag it. Downvote it. I've had it. My home country is
| a fucking joke. You antivaxxers are a joke. Now go waste your
| time going through my old comments and flagging them like the
| useless waste you are. Didn't think of that before I told you,
| did you? Not enough brain cells.
|
| People are paying 100+ Euros for fake certificates instead of
| getting free vaccines. We're sending people to neighbouring
| countries for treatment.
|
| All while the religious establishment yells about the vaccine
| being the devil's work and the masses buying it.
|
| All while they're caught up in corruption scandals haha. Maybe
| they've been infiltrated by the Antichrist now? How about that
| conspiracy?
|
| I remember how they said the same shit about biometric
| passports. Mark of the devil they said. Delayed their
| introduction by a good six months. Didn't kill anyone or damage
| their health though.
|
| All the priests and their believers have a phone in their
| pocket and by some miracle the Internet is cheap and fast.
| JTbane wrote:
| Yep, people seem to forget history. The polio vaccine had
| issues when it was rolled out in 1955. No one bats an eye
| taking it today because it saves lives.
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1383764/
| bserge wrote:
| "It's an old type of vaccine" - retards.
|
| If you don't like mRNA, surprise, you can get an old-style
| vaccine today!
|
| Jesus wept and the priests lied.
|
| That old joke with God and the drowning man should be remade
| with a virus lol
| sdhfjg wrote:
| >No one bats an eye taking it today because it saves lives.
|
| It saved lives in 1955. No one bats an eye taking it today
| because we know it's safe.
| throwawaysea wrote:
| I understand your sentiment, around people treating different
| diseases differently, but I am also not so sure that comparing
| polio and SARS-CoV-2 makes sense. Polio created a lot of
| psychological fear due to the graphic imagery of children dying
| or becoming permanently deformed. The WHO says
| (https://www.who.int/news-room/fact-
| sheets/detail/poliomyelit...) that 1 in 200 infected with polio
| experience irreversible paralysis (usually the legs), and 5-10%
| of those with paralysis die, meaning the IFR was 0.025%. The
| IFR for COVID-19 is incredibly low for those under 50, as most
| of the deaths impacted senior citizens. Even the CDC's
| conservative planning scenarios
| (https://www.cdc.gov/coronavirus/2019-ncov/hcp/planning-
| scena...) use a planning IFR for minors of 20 in 1M infections
| (0.002%) - which is an order of magnitude less than polio.
|
| The side effects you called out (like loss of smell) are rare
| to begin with, subside over time for most people, and aren't as
| serious as having to live on an iron lung. Additionally, it
| isn't clear if "long COVID" is even a real thing or just a
| casual/imprecise term for the unknown. My speculation is that
| many illnesses like the common cold have similar side effects,
| but we're only now rigorously studying and measuring them
| because of the prominence of COVID-19 in the public's mind.
|
| I would also point out that there are potential consequences
| from a lot of things we've done in response to COVID. Limiting
| social interaction, hiding faces/emotions, reducing oxygen
| intake via masks, normalizing government overreach, hurting the
| economy, keeping children out of schools, and so on can have
| impacts we don't yet understand. And then there's the potential
| for vaccines to have some kind of long-term side effect of
| their own. My sense of the probabilities and risks is that it
| is preferable to take the vaccine, implement some basic hygiene
| protocol, and avoid the worst of it. But I also feel there is a
| fairly wide spectrum of reasonable choices and policies in this
| situation.
|
| I'm also not sure what you're expecting in terms of taking it
| "seriously". COVID is going to be endemic. Everyone will be
| exposed to it over time. In terms of government intervention, I
| don't think it ever made sense to do more than 'flattening the
| curve', and even that was perhaps a step too far since those
| who are healthy and under 50 can more or less treat COVID like
| any other common illness. It may have even been preferable for
| that group to simply contract it and build up antibodies so
| that others who are more vulnerable could re-enter society with
| a lesser chance of transmission.
| hackingforfun wrote:
| > those who are healthy and under 50 can more or less treat
| COVID like any other common illness.
|
| Is that true? I thought that changed with the variants?
| bigodbiel wrote:
| Considering the global reaction to Covid, it is extremely
| serious. Anymore and we'd all be living under Beijing style
| lockdown and traffic light system
| jimmaswell wrote:
| We shut down the economy, forced everyone to stay home, made
| everyone wear masks, warp speeded multiple vaccines, and still
| make people wear masks at the doctor and the post office. The
| world has to keep turning at some point.
| azinman2 wrote:
| And many are fighting all of it every step of the way, even
| more not in compliance, etc
| tgflynn wrote:
| I won't argue you needn't worry about long term covid effects
| but I don't think comparison with polio does much to support
| that. Polio was known to cause paralysis in some patients since
| antiquity while covid is essentially a completely new disease
| that we just don't know that much about yet.
| spicybright wrote:
| I wish anti-vaxxers were more expose to this sort of news :(
| api wrote:
| You can't reason someone out of a position they didn't reason
| themselves into.
| Pet_Ant wrote:
| Sometimes if you can discover what motivates a person then
| expose it to then, in the light of day it loses it's power. A
| lot of arguments in couple's counselling resolve this way.
|
| But that requires listening to them, as people, not
| dismissing them. See what what it's really about
| gzer0 wrote:
| > But that requires listening to them, as people, not
| dismissing them. See what what it's really about
|
| You cannot listen to someone if they do not do the same
| back. From my own experience, questions are always
| deflected, even simple ones. I want to learn how and why
| they think, however, when I propose questions to do exactly
| that, it is taken as a personal insult rather than
| curiosity.
| [deleted]
| dang wrote:
| " _Eschew flamebait. Avoid unrelated controversies and generic
| tangents._ "
|
| https://news.ycombinator.com/newsguidelines.html
| penjelly wrote:
| thanks mods. HN really is the last place left i can go to
| have discussions that dont devolve into bickering.
| dang wrote:
| I wish that were more true but we do what we can.
| jsonne wrote:
| Perhaps a dumb question but I Googled and looked in the article.
| Do people spend 24/7 in iron lungs or simply do "sessions" or
| sleep in them? It was unclear to me how they actually function.
| tdeck wrote:
| An iron lung works by lowering the pressure around your body,
| while keeping the pressure around your head at atmospheric
| pressure. That gradient pushes air into your lungs, and then
| the iron lung raises pressure around your body to squeeze out
| that air.
|
| People who have had polio may lose function in their diaphragm
| muscles and require ventilation at all times. An iron lung user
| may exit the iron lung temporarily and use some other kind of
| ventilator, and some people have learned to force air into
| their lungs using the muscles in their mouth and throat without
| any machine. As you can imagine the latter can be tiring:
|
| https://en.wikipedia.org/wiki/Glossopharyngeal_breathing
| retrac wrote:
| Depends on the patient and the cause. Some require them 24/7.
|
| In the case of polio, the nerves controlling the diaphragm are
| sometimes affected. This can be partial, with a reduced but
| present breathing, or completely absent.
|
| In either case, but especially when only partial, people can
| often adapt when conscious and upright. Other muscles may not
| be affected, and they can use non-diaphragm muscles to
| expand/contract the rib cage. In mild cases this is just an
| assist and provides the extra ventilation for strenuous
| activity. In serious cases it's required to keep them
| conscious.
|
| While such adaption becomes an unconscious reflex, it's still
| largely suppressed when asleep.
|
| There are some parallels to how people with obstructive sleep
| apnea adapt. They may be able to breathe (e.g. through their
| mouth) during the day but at night, the instinctive breathing
| process isn't working quite right.
|
| The result is usually some kind of sleep apnea. Waking up
| feeling suffocated and having to will yourself to breathe. In
| the extreme, if that reflex doesn't kick in either, it could
| cause a hypoxic event, that inhibits breathing even more, and
| that's potentially fatal.
| jupp0r wrote:
| There is no guarantee polio doesn't return as resistance against
| vaccines is gaining popularity in society.
| tamaharbor wrote:
| And why not? I recall during the 2020 presidential election
| both Biden and Harris raised concerns about a potential
| coronavirus vaccine.
| semenko wrote:
| Physician scientist here -- this is a unique and somewhat odd
| case where Martha prefers to use the iron lung over modern
| alternatives.
|
| She would likely do fine with a modern non-invasive positive
| pressure ventilation (NIPPV) approach.
|
| There are many patients with other illnesses (COPD, ALS, etc.)
| that depend on nocturnal ventilation -- most commonly nocturnal
| BiPAP (two pressure levels that support respiratory muscles).
| mikesabbagh wrote:
| I am sure she tried a CPAP or something better suited for her
| needs.
|
| Maybe Sleeping with a mask on your face is more disturbing than
| sleeping neck high inside a machine. She definitely tried a
| face mask and determined this machine is better.
|
| But most people on CPAP did not get the chance to try an iron
| lung.
|
| So Maybe this is a chance to create a new product, any
| entrepreneurs here?
| treeman79 wrote:
| Took me a year to get used to cpap. Absolutely hated it. Now
| I'm terrified to go without
| rootusrootus wrote:
| Personally I can't handle a regular CPAP mask. If I didn't
| figure out a way to make the nasal mask work for me, I'd
| probably end up ditching the CPAP altogether.
| Pxtl wrote:
| She's slept in an iron lung for over 60 years. I imagine
| adjusting to sleeping in a more modern system would be
| incredibly difficult.
| idiotsecant wrote:
| Definitely. Imagine just trying to change how you sleep if
| you're a back or side or stomach sleeper. For most people
| that would be pretty difficult, I think. It seems like this
| is an even more dramatic change.
| rootusrootus wrote:
| Difficult but hardly undoable. My dad didn't get a CPAP
| until he was in his 70s. Turned him into a believer, even
| though he had to relearn how to sleep. My father-in-law had
| to sleep in an easy chair after his bypass surgery, and
| then relearn how to sleep in a bed after that. So it may be
| difficult, but people do it all the time especially when it
| improves their quality of life.
| 14 wrote:
| I work in healthcare and see these machines all the time.
| They seem way less invasive then a giant metal lung and
| would not be hard to adjust to. I wish I had one for days
| when I am sick like with a flu they seem like they would
| make breathing much easier.
| skrbjc wrote:
| I wonder why this isn't mentioned anywhere? If she is worried
| about not having parts for the iron lung, it's more about her
| preference to use it than whether she can live or not, it would
| seem.
| masklinn wrote:
| The article quotes:
|
| > "I've tried all the forms of ventilation, and the iron lung
| is the most efficient and the best and the most comfortable
| way," she told Radio Diaries.
|
| At no point does it say that she _can not_ use any
| alternative.
| skrbjc wrote:
| Whoops, sorry I must have missed that, thanks for pointing
| it out.
| MattGaiser wrote:
| Journalists diagnosing someone and proposing new treatments
| seems a bit outside their skillset.
| rootusrootus wrote:
| OTOH, it would be great if the journalist could take her
| experience and bounce it off an expert and report what they
| said. Otherwise it's just a biography.
| morelisp wrote:
| > Otherwise it's just a biography.
|
| The article is a sample of the PRX show "Radio Diaries".
| It's supposed to be a biography.
| da_chicken wrote:
| Eh, there's a league of difference between "does fine" and
| "does well".
|
| I'm willing to bet she's had many doctors suggest modern
| alternatives and that she's tried alternatives, not the least
| because iron lungs are generally not produced anymore so
| they're more difficult to maintain and can't easily be
| replaced.
|
| However, if she truly prefers it and it's therapeutic and she's
| able to maintain the device... what's the problem? "This other
| thing is a newer treatment," isn't really a description of
| efficacy or appropriateness or therapeutic benefit or patient
| comfort or outcome.
|
| Just because something is old doesn't mean it's bad. A
| treatment that's proven to be effective for 50+ years shouldn't
| be discarded out-of-hand because newer treatments exist.
| teruakohatu wrote:
| > "I look at it as a friend, as a very dear friend."
|
| It seems understandable that a person might become attached to
| a device that keeps them alive.
|
| Also it might be more comfortable for her sleeping without a
| mask on, if she is used to the sound of the motor.
| poo-yie wrote:
| Here's a fascinating and inspiring article about a man who is
| confined to an iron lung who is an attorney and uses his computer
| while in his iron lung:
|
| https://www.usnews.com/news/healthiest-communities/articles/...
| poidos wrote:
| Thanks for sharing this - this line made me particularly
| emotional:
|
| > To this day, the words he recalls her saying make him
| emotional: "When I'm dancing with others," she said, "in my
| head I'm dancing with you."
| scotty79 wrote:
| Did you know that polio is survivable in 99.8% of cases and
| asymptomatic in 92% (up to 99% by some estimates) of cases?
|
| Mention this to people that think covid is mild non-issue.
| SigmundA wrote:
| My grandfathers brother had polio and was crippled for life.
|
| I always remember how my grandparents talked of vaccines having
| seen the effects of polio and smallpox when they where growing
| up. They considered vaccines a modern miracle and could not
| imagine not getting them.
| MBCook wrote:
| I've heard the theory that people are much more hesitant to
| get vaccines now because they've never seen the terrible
| diseases due to the success of vaccines in the past. Sort of
| tragedy due to success.
| SigmundA wrote:
| Thats my take too just based on talking to my grandparents
| vs anti-vax friends.
|
| The anti-vaxxers just have never experienced the direct
| impact of a crippling but now easily preventable disease
| and what life was like before modern vaccines.
|
| However they are looking to blame something for an autism
| spectrum kid ignoring the obvious which increased and
| broader diagnosis along with having kids older than
| previous generations.
|
| No one wants to blame themselves understandably, so
| vaccines are a good scapegoat and not getting them is less
| risky now days due to the diseases being nearly eliminated
| so it all works until these old diseases come back, which
| they have.
| AnimalMuppet wrote:
| Interesting. The vaccines got us to a world where it's
| rare that bad things happen - to the point that we kind
| of think that nothing bad should ever happen. But when
| something bad happens (autism), they blame the thing that
| got us to the point where bad things are as rare as they
| are.
| heavyset_go wrote:
| The rate of paralysis is low, too, between 0.05% and 0.5%.
| Children in particular had a paralysis rate of 0.1%.
| tfigment wrote:
| Sadly I don't think facts help these people change their minds.
| The opposition is rooted generally in perception and not
| truths. Anything can be rejected this way.
| the_doctah wrote:
| Polio vaccines are a cure. Covid vaccines are not.
| SigmundA wrote:
| What does that mean? The polio vaccine is considered 100%
| effective at 4 doses while 90% at 2. Does a vaccine have to
| hit 100% effectiveness at some number of doses to be
| considered a cure?
| retrac wrote:
| Polio vaccines are not a cure. They do not treat the
| infection nor the after-effects.
|
| Also, people who have been vaccinated can still, in
| principle, contract polio. Like people with immunity from
| previous infection, generally they get a very mild and
| asymptomatic case that clears almost immediately.
| manquer wrote:
| No they are not, no vaccine is 100% effective.[1]
|
| In the case of Polio there is actually Vaccine derived
| poliovirus VDPV[2], the person getting the vaccine is immune,
| however he can transmit it to un-vaccinated people for the
| OPV version which was administered in the U.S. till 2000
|
| OPV is known to cause paralytic poliomyelitis(polio) in 3
| cases per million doses given [3]
|
| [1] https://www.cdc.gov/vaccines/vpd/polio/hcp/effectiveness-
| dur...
|
| [2] https://www.cdc.gov/vaccines/vpd/polio/hcp/vaccine-
| derived-p...
|
| [3] https://pubmed.ncbi.nlm.nih.gov/27894720/
| throw10920 wrote:
| Huh, there's a (very small) chance to get permanently
| paralyzed from the polo vaccine? :|
|
| Why do people think that it's a good idea to shield vaccine
| manufacturers from liability, again?
| yupper32 wrote:
| If they weren't shielded from liability, would there be
| any company willing to take on the risk of administering
| the vaccines to 92%+ of the population (US polio vaccine
| numbers via CDC)?
|
| They're shielded from liability because we as a society
| have determined that the benefits outweigh the risks with
| all the currently recommended vaccines, and that the
| companies that develop these vaccines shouldn't be
| punished for creating a massively net-good for society.
| heavyset_go wrote:
| If you have polio and take the polio vaccine, it will do
| nothing. It is no cure for polio, it is prophylaxis.
| h2odragon wrote:
| I hope this isn't a situation where she can't hire someone to
| make new collars, for example, because they couldn't be
| "certified" soemhow.
|
| I'm sure there's all sorts of subtleties and issues with keeping
| this machine running that aren't apparent at first thought (or
| even glance).
|
| It doesn't seem beyond the bounds of what home brew hardware
| hacking can do, even without the lovely set of pre-made suitable
| parts the dysfunctional machine is.
| spicybright wrote:
| I wouldn't be surprised if certification or the like go out the
| window seeing how old the tech is.
|
| I don't even think anyone but the people making the collars
| could verify it's safety.
| dang wrote:
| Past related thread:
|
| _The Last of the Iron Lungs_ -
| https://news.ycombinator.com/item?id=15742901 - Nov 2017 (65
| comments)
|
| Also:
|
| _One of the Last People to Live in an Iron Lung Is a Longhorn_ -
| https://news.ycombinator.com/item?id=25785650 - Jan 2021 (1
| comment)
|
| _Reinvented 'Iron Lung' Technology_ -
| https://news.ycombinator.com/item?id=22756993 - April 2020 (1
| comment)
|
| _Ask HN: Where to find specifications for pressure for an Iron
| Lung_ - https://news.ycombinator.com/item?id=22582257 - March
| 2020 (3 comments)
|
| _A Callout: Parts for an Iron Lung_ -
| https://news.ycombinator.com/item?id=15777702 - Nov 2017 (23
| comments)
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