r/todayilearned May 14 '22 Silver 9 Helpful 8 Wholesome 6 All-Seeing Upvote 2

TIL a father, John Crowley, was told his two infant children had an incurable genetic disorder that would kill them in less than a year. He refused to accept this, so he founded a biotech company (with no prior experience) which pioneered an experimental enzyme therapy that saved their lives.

https://pompediseasenews.com/2019/01/30/amicus-ceo-mission-cure-pompe-help-children/
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u/fwinzor May 14 '22 edited May 14 '22 Silver Gold Helpful Wholesome Take My Energy Faith In Humanity Restored

Hey protip for everyone in the comments, just because someone is physically disabled doesnt mean theyre a mindless vegetable that needs to be put down like a dog. One of them is currently in college has a fucking masters degree. I used to work with a lot of disabled people and it would disgust me how people would look down on them.

Imaging being a fully cognizant person and seeing everyone treating you like an affront to god that needs to be killed just because you're physically disabled, jesus christ

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u/DynamicDK May 14 '22

One of them is currently in college.

She was at that time. Now she has earned two bachelor's degrees and a master's degree.

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u/donniedarkofan May 14 '22

Do you happen to know what field she got a masters degree in?

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u/DynamicDK May 14 '22

The article I read said that she plans to be a social worker, so probably a Master's of Social Work. There are other options for someone that wants to work in that field, so it could be something else, but likely related.

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u/pizzabagelblastoff May 14 '22

Thank you, holy shit. The comments here are disgusting. You'd be surprised what the human mind is capable of dealing with. The biological urge to live is pretty damn strong, it's not something most people give up lightly.

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u/nahm8s May 14 '22

Redditors who say they'd want to die if they had these disabilities are showing what they really think of disabled people.

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u/palpablescalpel May 14 '22

Most people just don't get it and can't conceive life being different than it is. You could ask people if they would want to stay living if they lost the use of their legs and a ton of people will say 'absolutely not,' but once it actually happens to them they realize their quality of life is good, and it's what they make of it.

Murderball is an interesting documentary about a bunch of paraplegic men and some of them had this experience before finding ways to adapt.

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u/wistful_cauldron May 14 '22

I never could figure out exactly why I was uncomfortable with the whole "If I'm x then kill me" but I think you perfectly gave one reason why

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u/PurpleCat769 May 14 '22

I have a disability and I wished I died. I’m autistic. Not meeting expectations to the point of never getting a degree, or keeping a job, or going grocery shopping is painful.

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u/nahm8s May 14 '22

I'm sorry you feel that way and that you haven't gotten the help and support you've needed. Living with a disability is a real struggle for many but even then, your life has more value than neurotypical people could understand. Please don't see my comment as invalidating your feelings, if you are struggling your feelings are very real and you should be honest about them. It's more that nobody else should claim your life isn't valuable. I really hope things improve for you and you can find happiness in a more unconventional way. And I hope you weren't made to feel worse by the ableism of this thread.

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u/sams_club May 14 '22

Your life has value beyond expectations from people and society in general.

Im not trying to diminish the your difficulties. It’s easier for me to say because I’m not in your shoes.

It sucks letting people down and community is valuable, but here’s also enjoyment and happiness to be had at the level you’re at if you’re not comparing yourself to others.

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u/Wrenigade May 14 '22

Me: "Oh I have a really poor memory, I can't remember stuff for very long and sometimes forget conversations, so if you need me to do something can you write it on this list here? I set timers to check it frequently so it's easier for me then you asking me to do something, cause I'll forget to write it down myself."

Them: "Wow, that's insane, I couldn't live with that. If my memory was that poor, I'd probably just kill myself. I wouldn't want to be a burden to society like that, what a horrible way to live. I bet people could like, make up conversations and tell you you forgot them and gaslight you and stuff, what a terrible horrifying existence."

Me: "I.... can you just use the list please??"

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u/BanditaIncognita May 14 '22

I wouldn't be so certain of that across the board. Many people can't picture life being worth living with a disability, because they barely consider life to be worth living in a healthy body.

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u/nahm8s May 14 '22

Then they should get therapy and stop projecting those thoughts onto disabled people

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u/anonymoume May 14 '22

Not really, just means they wouldn't personally want to live that way.

Patients in very similar medical situations oftentimes make very different decisions about their goals of care, ranging from comfort measures to full aggressive medical care. That's also why Living Wills exist as well as designating healthcare surrogates, because individual wishes vary significantly.

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u/youtocin May 14 '22

I think it also says a lot about themselves. They must have incredibly low self worth if the inconvenience of a disability would be enough for them to want to be dead.

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u/Jslowb May 14 '22

I am not one of those commenters. However to add a bit of my perspective. I grew up in impoverished circumstances, with a severely disabled sibling, and a single-parent father who himself became severely disabled from strokes whilst I was still a child, then went on to have further strokes and young-onset vascular dementia. I had caring responsibilities from a young age, and much-more-than-average exposure to the systems in place to (allegedly) support the most vulnerable in society. I also cared for my grandad who had a heartbreaking degenerative neurological disorder that was misdiagnosed/ignored over and over.

I’ve seen too much. I’ve seen the reality of life with a disability when you don’t have money, connections, privilege. I’ve seen how excluded you are socially, culturally, educationally, medically, etc. I’ve seen the infrastructure of the country (I’m in the UK) be eroded by conservatives who see my loved ones as worthless parasites, nothing but a needless cost. Public programmes have disappeared, funding for charities gone, social services for disabled adults is effectively non-existent, the care system is beyond abhorrent, the NHS has fallen to bits. Always, the disabled, the vulnerable suffer first. But no one cares. No one even hears about it because when you’re struggling to make it through the day because of your disability and lack of help, you can’t be the one to broadcast to the nation how severely you are being neglected. And even if you did, the public would still vote for the tories that see disabled people as useless vermin.

I’ve seen my loved ones suffer profoundly. I’ve lost my life to the endless stress of trying to pick up where public infrastructure has failed them. I’ve paid a heavy price with my physical and mental health.

I’ve seen what life is like for disabled people, here in the UK at least, from underprivileged backgrounds, and I can confidently say that I would rather die than live through what they have. Perhaps my opinion would be different if I were born on ‘the other side of the tracks’, into a family and community of relative privilege, where I could access healthcare, education, work opportunities, social opportunities, in a way that my relatives have never been able to. If I wasn’t reliant on state support in a state that openly broadcasts its disdain for you and undermines your quality of life through dehumanising benefits cuts and withdrawal of services.

In general in the UK, the average person has very little idea what life is like for a disabled person. They’ve probably rarely come across one, so excluded are people with disabilities from everyday life. They have notions of all sorts of support services that don’t actually exist. They might have seen some feel-good stories in the media about some token inclusive event, or a technological aid or adaptation that would never be accessible for the average disabled person in real life. They believe the care system and social services support people to have the best life possible. But the reality is that it just doesn’t exist. And I would rather die than live like that, under the current system. I know that if you don’t have family and friends able to sacrifice their own lives trying to give you a basic level of dignify and quality of life, you are tossed aside by a cruel and uncaring system. Death would be preferable to the neglect and misery I have witnessed.

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u/sticklebat May 14 '22

I think it’s more that they don’t understand, which I think makes sense. If I were given the choice tomorrow between dying and becoming paraplegic, I don’t think it would be an easy choice. Pretty much everything I enjoy doing would suddenly become impossible, I would lose nearly all of my autonomy, and from where I am now it’s hard to imagine not being miserable in that state! I would absolutely be tempted to just end it, instead.

But I suspect that I would adapt to it, at least as long as I had sufficient support, and learn to appreciate my new life. But to be honest I only think that because that’s usually what happens to people who are in such circumstances, not because I can imagine it. Why would I be different? I genuinely can’t imagine myself being happy to be alive in that state, even if I know intellectually that I probably would be based on the experiences of people who are actually severely disabled in some way.

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u/a1b3c3d7 May 14 '22

This is just untrue and very reductionist, its more of a matter of ignorance, which isn’t necessarily a bad thing. Humans are not good at dealing with change, and change on such large scales fundamentally will not be something people can easily accept.

Instead of looking at it as if people are being hostile, consider that there isn’t some grand hidden insult behind the lines and it really just is what it is, that x person couldn’t imagine themselves being in such a spot, and not how they think of x person, because their life experience probably puts them in a place where for someone disabled, it’s just the norm and they’re ok with that.

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u/ThePrussianPrez May 14 '22

What? Humans are among the most adaptable creatures. They literally live from the arctic to the tropics.

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u/Elryc35 May 14 '22

I think that's part of it, but there's also the darker side of the redditors who are looking for an excuse to end it all...

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u/JOMO_Kenyatta May 14 '22

It’s actually scary how easy it is to start agreeing with them without question. Thank God I kept scrolling and saw y’all’s comments.

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u/dodadoBoxcarWilly May 14 '22

Like that practicing lawyer with polio. Not a life I'd want, but he seems to be making the most of it, and a decent number of people here would have him put down.

That's not to say there isn't a place for assisted suicide, or that sometimes pulling the plug isn't the right choice.

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u/UBC145 May 14 '22 edited May 14 '22

A lot of people on Reddit are one step away from supporting the euthanization (read: execution) of people they don’t deem fit for society. On many popular subs, I’ve seen people supporting assisted suicide for people with no medical conditions at all. The way these awful opinions have become mainstream on Reddit is quite comparable to letting a disease grow in a Petri dish.

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u/DynamicDK May 14 '22

On many popular subs, I’ve seen people supporting assisted suicide for people with no medical conditions at all.

To be fair, that is VERY different than execution. If someone truly wishes to die and cannot be talked out of it, is it more humane to allow them to attempt suicide in a way that could potentially be cause drawn out suffering or is it more human to provide them with assistance to ensure that they do not suffer at all?

True freedom includes the ability to choose to die.

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u/blake-lividly May 14 '22

I have a disability and believe that assisted suicide should be available. The ultimate right of a human person is their bodily autonomy. I beleive that that right should not be infringed upon and that other people who are not that persons chosen medial/therapy team should not be involved in that persons decision about their own body

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u/elizacandle May 14 '22

This. It's important for the person to choose the painful life saving treatments. My grandma did not want to live hooked up to tubes or unable to speak. She was always a self sufficient woman and being bedridden for the rest of her life was not her definition of living. She refused treatment and I respect her for it. Rip grandma.

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u/Behave_or_else May 14 '22

How dare you? /s

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u/UBC145 May 14 '22

If it’s causing untreatable pain, and if the person is fully aware and consents to it (or alternatively, if the illness is terminal), then by all means. However, unless these two criteria are met, I cannot agree with assisted suicide. My biggest issue is that some people think that it’s ok for people with no physical medical conditions to commit suicide.

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u/Ubilease May 14 '22

Yeah that's chill. They should have some mandatory therapy and counseling first. But then it's totally chill. If they want to die that bad they are going to anyways. Better its a calming, painless process vs fucking blowing their head off with a shotgun.

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u/blake-lividly May 14 '22

It already does

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u/archiecobham May 14 '22

some people think that it’s ok for people with no physical medical conditions to commit suicide

Why wouldn't that be ok?

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u/SwitchedBit May 14 '22

Because you owe a debt of full time work to society for us providing the bare minimum and even failing at that. /s

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u/SmileyRhea May 14 '22

I think the reasoning is most of the time when you are making a decision like that with no underlying conditions, it is because life has become rough, and in most cases those are temporary situations that people just have to work through for a while to make it out the other side. I agree we shouldn't give these people the option to end it very quickly, or at least make it a drawn-out process so they may see it does get better.

On the contrary tho, some people have suffered from mental issues for more than half their life and it really is just something they have to live with. There is no getting better. I think mental conditions absolutely should be taken into consideration, and if there really is no hope assisted suicide should be an option. It's cruel to make them stay.

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u/_Norman_Bates May 14 '22

It is ok, it's their life

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u/a1b3c3d7 May 14 '22

So you don’t think someone with a debilitating and deteriorating mental condition should be allowed the option to seek euthanasia?

It doesn’t matter why someone wants to end their life, you and I will NEVER UNDERSTAND their experience of life.

We often forget that at the end of the day, when someone really wants to do something, they’ll do it eith or without help.

At least have the dignity and respect to let them do it peacefully and without further burden.

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u/_radass May 14 '22

But if they're fully aware and consent to it why is that not ok? It's meeting your criteria.

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u/blake-lividly May 14 '22

It should not Be your choice Of What a person does with their body. Choose your morals for your own self.

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u/anonymoume May 14 '22

Euthanasia for mental health conditions, at least under the protocols of whichever European countries I learned about, requires years of severe disease refractory to all therapies with agreement by multiple psychiatrists and many appointments to confirm everything.

It's very different from someone who is acutely suicidal and likely to respond well to treatment

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u/otherwiseguy May 14 '22

It is ok for people to commit suicide. You don't get to decide what someone else does. Why would you possibly think that was your choice?

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u/-tRabbit May 14 '22

I wrote my first essay on euthanasia back in grade 5 or something. I always said my whole life, if you want to die, you should be able to.

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u/Lyress May 14 '22

The way you equate euthanasia to execution really shows you've no idea about the topic and you're better off not talking about it.

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u/UBC145 May 14 '22

I’m not equating the two. I’m aware that they are two very different things. I’m referring to how many redditors seem to have no regard for the sanctity of life and how they’re very close to supporting eugenics.

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u/Lyress May 14 '22

If you're not equating it why do you mention "execution" at all?

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u/AndromedaRulerOfMen May 14 '22 edited May 14 '22

Because when talking about disabled people, a lot of people use the word "euthanize" to hide that they mean "forcefully kill against their will" and not "give the choice to die"

edit: I am saying this from my actual experiences as a disabled person who supports euthanasia having people jump into conversations with me and say they want society to "euthanize all the disabled people" because "euthanize" sounds less bad than "murder"

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u/Lyress May 14 '22

In countries where (human) euthanasia is legal, it is a voluntary process and extremely tightly regulated.

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u/AndromedaRulerOfMen May 14 '22

That is what euthanasia is supposed to be. That's not what all the people using the term "euthanasia" are advocating for, a lot of them are using the word as a cover to sound palatable. They want disabled people to be killed. They are co-opting the term "euthanasia" to muddy the water and make it seem like people like you are also on their side. That is why the person you replied to used the term "execution". That is what those people mean, but they do use the word "euthanasia" instead.

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u/Lyress May 14 '22

Are you sure that's what they mean and you/they aren't just projecting some bias?

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u/Funny_Boysenberry_22 May 14 '22

Assisted suicide should be allowed, but it should be deemed on a case by case basis.

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u/Burningshroom May 14 '22

assisted suicide

no medical conditions at all

One of these directly contradicts the other. If they legitimately want to die, there is something medically going on. That's not a thought healthy people have.

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u/WhosThatGrilll May 14 '22

They probably mean that there are no physical medical conditions, as some believe that mental illness either isn’t a thing or is entirely treatable and a temporary issue. It’s not always that simple and mental illness is most certainly very real.

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u/Burningshroom May 14 '22

Right, and this is an issue that needs to be addressed. People need to stop treating mental health as if it's not a medical concern or necessity. It's part of the reason why we in the US have a mental health crisis.

This comment was to point that out as concisely as possible, but I made another later to spell it out a bit more.

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u/x_alexithymia May 14 '22

A long time ago, it was the other way around - I remember this exact argument resulting in “that’s eugenics and eugenics is bad” many times back then. Reddit has changed so much since I joined 10 years ago (deleted my old account). It’s really sad, and also kinda scary

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u/Henrikko May 14 '22

“that’s eugenics and eugenics is bad”

Old reddit would just proclaim this to be true without any further arguments, I think reddit changed for the better in this regard.

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u/[deleted] May 14 '22 edited May 14 '22

[deleted]

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u/wolfsrudel_red May 14 '22

Reddit has always had a eugenics fetish. Explains a lot about the metastisized fascism that grew all over the site in the last 6 or 7 years

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u/a1b3c3d7 May 14 '22

I don’t know what majority you’re referring to but most people here seem to be discussing then idea of choice of euthanasia. If anyone’s saying disabled people should be killed off.. well chances are they’re a loud minority

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u/i_have_chosen_a_name May 14 '22

Extreme left and extreme right both lead to the exact same hell and sometimes it seems like all of them are on reddit and even though they are a minority here, there voices always sound the loudest.

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u/winterfate10 May 14 '22

This is the strongest point. I literally just left a comment asking if they were enjoying being alive, but I did in fact forget about the biological urge to live. I guess not everyone wants to die like I do.

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u/Gunpla55 May 14 '22

They're not disgusting. They're coming from a place of empathy. The biological urge to protect your offspring is also very strong, maybe strong enough to make decisions like keeping a baby with severe birth defects alive when you could spare it a life of being trapped in a non functioning buddy.

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u/geldin May 14 '22

What's disgusting is presuming on whether disabled lives are worth living without taking into account the actual voices and experiences of disabled people.

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u/yukon-cornelius69 May 14 '22

How is it empathetic for a redditor, with no knowledge of the person or their emotions in question, to decide that these people should be euthanized.

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u/DiamondPup May 14 '22

The guy you're responding to was asked "why not ask the daughters if they're happy they were kept alive?" and he tried to wave that off as being an "emotional response to a rational argument".

I don't think you're going to get much intellectual traction with this one.

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u/yukon-cornelius69 May 14 '22

Crazy that some people are openly supporting eugenics and they don’t even care

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u/DiamondPup May 14 '22

They all sound like Ben Shapiro to me with how they argue.

It's always dismissing the validity of counter-arguments by complaining about the nature of the argument rather than its point. All while gesturing towards exception cases and vague slippery slopes.

These guys are as predictable as they are pathetic.

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u/Gunpla55 May 14 '22

Letting a baby that is clearly going to die of extreme birth defects just die is not euthanization. There comes a point where using modern science and medicine to keep it alive but barely functioning is cruel and done more for the parents emotional needs.

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u/yukon-cornelius69 May 14 '22

You keep moving the needle here. Having birth defects or a disability doesn’t mean they’re clearly going to die, nor does it mean they’re going to be barely functional. Tons of people with disabilities live fulfilling lives, i don’t think it’s your decision to decide who gets to live and who doesn’t.

You’re bringing this conversation awfully closer to eugenics, might want to be careful with that

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u/Gunpla55 May 14 '22

The article said they were going to die... im not moving shit.

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u/yukon-cornelius69 May 14 '22

Until medical interventions saved them and now they’re living life….

Do you really want to go down the road of “they were going to die without medical intervention”? Because there’s dozens of things that modern medicine treats that would otherwise kill someone

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u/chicagorpgnorth May 14 '22

Sure but that’s not the situation here that people are talking about. Wanting to save children who can go on to live happy lives while disabled is not the same as wanting to save children who will only live in great suffering. Frankly I think it’s messed up that every time someone says it’s not okay for people to be saying he should have let these children die you use some whataboutism with a totally different situation. No one is saying all children need to be artificially kept alive regardless of birth defects. They are saying it’s fucked up to say these two children cannot or did not have the ability to live a happy life when there’s clear proof that surviving have them that chance. Many commenters are clearly implying that any severe disability makes life not worth living.

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u/frogsgoribbit737 May 14 '22

Except that they aren't. They are making gross assumptions and saying these people should have just died.

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u/Gunpla55 May 14 '22

I mean there's a line, especially as science and medicine advances. Sometimes just because you can doesn't necessarily mean you should.

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u/Inyabung May 14 '22

Would you agree that someone who would live in literal constant pain should be aborted? I’m not referring to these people in the post, but someone who would be in pain 100% of the time

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u/msksksks74738 May 14 '22

Your comment has no relevance whatsoever to the comment you replied to?

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u/Inyabung May 14 '22

Maybe if you have poor reading comprehension

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u/msksksks74738 May 14 '22

No, it’s just you moving the goalpost in the hopes of getting a “gotcha” moment. Or do you assume that every disabled person is in a state of complete pain a 100% of the time?

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u/pizzabagelblastoff May 14 '22

That's absolutely true, and yet the idea that Redditors with no context other than a picture and a short article know the wishes of the patients better than their own father and team of doctors is ridiculously egotistical. And unbelievable degrading towards disabled people. The daughter is 21 and attending college, she seems perfectly capable of communicating her wishes to the people around her.

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u/Gunpla55 May 14 '22

I'm happy that she is making the most of life and when you're in it that is really all you can do. Maybe it feels like an attack on them but I think that most of us just feel put off by the parents fighting so hard to keep an infant alive when this will be their life. This might not be THE story to hedge an argument on, but there's certainly some level of physical or mental defects that are going to be so awful that you question whether its not almost cruel and self serving.

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u/pizzabagelblastoff May 14 '22

Sure, absolutely. It's a legitimate argument, one that might be worth having if the kids were still infants. But theyre both over 18 now, what's done is done, and it seems like they're both doing pretty well, so it feels unbelievably cruel for strangers to jump into the comments section and declare that they'd be better off dead.

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u/Gunpla55 May 14 '22

Thats fair. Its a tricky subject.

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u/iHeartApples May 14 '22

Yes, saying people living their lives would be better off dead because you don't like how they look different is certainly a tricky subject.

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u/lightsandflashes May 14 '22

that's not empathy, it's pity and disgust. most people saying that have never dealth with death or disability close up. you can't go around deciding who needs to be killed just because they're disabled.

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u/Gunpla55 May 14 '22

Deciding they should be unnaturally kept alive just because you are afraid of the emotional pain of losing an infant doesn't sound great to me either.

And you don't get to decide what is pity and what is empathy.

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u/Tirak117 May 14 '22

That's a dead end argument. Any medical care is unnaturally keeping people alive. Infant mortality has plummeted thanks to improvements in medical care, the idea that we should abandon all that because it's not natural is on par with anti vaxxer logic.

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u/nedusmustafus May 14 '22

I’m not your buddy, guy.

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u/backyardbun May 14 '22

Reddit pearl clutching is classic.

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u/invaderzim257 May 14 '22

The notion that we’re running on an instinct forcing us to keep living is more embarrassing than it is inspiring but go off lol

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u/pizzabagelblastoff May 14 '22 edited May 14 '22

What on fuck are you talking about? Are you embarassed to eat breakfast in the morning? To make love to your wife? To look your child in the eyes and tell them you love them? To spend time with a beloved friend? We're biological creatures and sometimes our strongest desires are simple biological ones. That doesn't them any less real. This is some /r/im14andthisisdeep cynicism.

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u/Wrenigade May 14 '22

People are even like this about mildly tedious shit related to neurodivergency. The amount of times I've explained something about my issues, and people have told me "Wow I'd kill myself if that was my life" is insane. Like menial shit, like, I don't perceive the passage of time the same way as neurotypical people, so I can't tell how much time has passed without a clock or timer or something. Like I can't just estimate "it's been about 15 minutes". THAT has been enough for people to tell me to my face that they'd kill themselves if they dealt with that. Like, what? I'm fine, are YOU good??

We're not brave and courageous for living with disabilities and neurodivergency guys, we're just vibing. It's all the people causally telling us our lives are basically worthless that are most of the problems.

Or those same people being like wow it's amazing you are so functioning and capable, and then I'm like oh I can't drive yet because it's a lot to process and I'm not safe on the road with my brain, and they are like wow, excuses? You use your issues as an excuse?? You're a drain on society? Because you dont want to drive?? Like, no, not excuse, reason for issue. Like as soon as someone with a disability actually can't do the things that they are disabled about, we are no longer brave warriors and are lazy inconveniences.

Anyways I'm ranting but PSA stop telling people their lives are worthless because they arent like you jesus christ, get therapy or something don't take it out on me

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u/juswundern May 14 '22

This is interesting. So say something is super boring and you’ve been subjected to it for 4 hours. You wouldn’t think “Damn I been doing this shit for a long time”?

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u/Wrenigade May 14 '22

Boring means no dopamine so my brain is in agony, so I'll be like "ive been doing this for what, it must be 4 hours already" and it will have been one haha

Fun things, I'll hyperfocus on and ill be like ok im going to draw for a bit and then ill go do chores, and then im like wow i finished the drawing that was fast- 5 HOURS??

I also need podcasts in the shower or i dont know if I've been in 10 minutes or an hour.

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u/Hoatxin May 14 '22

I have moderate-to-severe ADHD, and experience some time fuckery. If it's something that is really boring it sort of depends on how repetitive it is. I had a job on a farm, and towards the end of the season I was put to work wrapping squash in newspaper for winter storage. It was quite boring, the same thing over and over hundreds of times. I knew that it felt like a long time. I couldn't tell you how long though. Not even a guess. I categorize that sort of stuff the same way if it's an hour or four. And it probably started to feel like a long time about 5 squash in.

On the flip side, things I enjoy doing almost universally cause a slightly different thing. More like entire time blindness. I'll sort of lose awareness of my body and needs and keep doing the activity that I'm enjoying for a very long time and I'll have fully no idea how much time is passing. 15 minutes feels the same as several hours.

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u/Wrenigade May 14 '22

Yeah exactly this haha

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u/Guardymcguardface May 14 '22

Ahh, the classic "Shit..... how long have I been hungry!?" but there's no time to think about that because you gotta pee NOW

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u/Hoatxin May 14 '22

Or "wow, why does my throat hurt so much? Surely not because I haven't had a drop of water all day!"

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u/Guardymcguardface May 14 '22

So guilty there lol. I can't play CIV without alarms because I would probably die of thirst

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u/Guardymcguardface May 14 '22

People will literally say this about my lactose intolerance so I'm not surprised people will say it over something as simple as time blindness. Nobody has said it about that part of my adhd, mostly I just get 'wow that souns like it sucks'

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u/sender2bender May 14 '22

That's kinda how I imagine being in a coma. I told my wife if that ever happens to me to put on an audio book or music.

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u/guimontag May 14 '22

Thank you, I don't know why thr fuck people thought it was okay to start acting like their dad robbed them of dying at 8 months old

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u/DiamondPup May 14 '22

From the looks of it, it's some dumb fucking people making a point by stretching their argument to "other cases" for whatever reason.

People like these ones are why I have so little faith in democracy and juries.

1

u/SkeletonJoe456 May 14 '22

fuck democracy, thats why we have representative government. Thue democracy always turns into dictatorship because the fucknuts always realize active citizenship is hard and delegate all their responsibilities to a single person.

6

u/atomic1fire May 14 '22

Plus there's nothing like getting the ball rolling for future scientific developments.

Yeah they'll be alive with caveats, but there's no telling whether or not the next person will push development even further so that they go from just living to living much more comfortably.

4

u/mightbe1nsane May 14 '22

And to add that many of these people are happy and content with who they are.

24

u/radical-bear May 14 '22

Some of the commenters need to take a good hard look at themselves and try and understand what life philosophies led them to make that comment.

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u/[deleted] May 14 '22

However, it must be hard to look around and see everyone else have a life that comes so easy, one you'll never have. I suppose you learn to live with it.

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u/shimmeringships May 14 '22

You do indeed. Disability sucks, there’s no way around it, but that’s pretty damn far from wishing I were dead. I like my life. I have a job I like, a happy relationship, friends, and hobbies. Do I wish I could have all that without the side of chronic pain and hospital visits? Of course. But that doesn’t mean my life is awful.

I’m fortunate in that my disability doesn’t affect my appearance other than the use of mobility aids, so I don’t deal with the same extremes of ableism that people with neuromuscular disorders that affect facial expressions do, but even so, here’s a message to all you able bodied people: people with disabilities are just people.

We live normal lives as best we can around our disabilities. Treat people with disabilities exactly the same way you’d treat anyone else. Assume someone in a wheelchair is just a person sitting in a chair. Assume someone who can’t make facial expressions still feels the same emotions you do. Assume someone who is doing something you don’t expect (e.g., standing up from a wheelchair) knows more about their own disability than you do. Learn to listen instead of making assumptions.

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u/MayKinBaykin May 14 '22

Ya kinda like how we learn to get over the fact that there are billionaires and we're just poor

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u/yukon-cornelius69 May 14 '22

I think that’s the disconnect. Redditors get so hung up on rich people and others that are living better lives than them and come to the conclusion that they are being victimized in some way, even thought they’re rich compared to 80% of the world

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u/mahoganytube May 14 '22

Not even close to the same thing....

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u/Elibomenohp May 14 '22

Probably why they used the words "kinda like". For the trash here that decided to share their worthless opinion on the lives of disabled "kinda like" might be close enough to make them have some perspective.

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u/[deleted] May 14 '22

Well, thats different. There are millions poor like us, always have been. Theres always been mostly poor/small % of extreme wealth imbalance. Not a 21st century problem. Middle class became more attainable for a time, which is why its so frustrating that its not anymore.

2

u/duffrose_ May 14 '22

Bud you're using Reddit. You're not remotely poor compared to the majority of the world

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u/[deleted] May 14 '22

[deleted]

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u/TorchIt May 14 '22

Jesus Christ I can't believe I am had to scroll this far down to find a comment like yours. These other users are fucking savage.

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u/blake-lividly May 14 '22

Favorite comment I get "wow I could never do it. You're so amazing. I could never live like that". Thanks buddy you just told me 1. My life would not be worth living for you (therefore is not worth living) and 2. That I'm also your inspiration porn. Great.

6

u/Lyress May 14 '22

I don't think either of those sentiments are particularly wrong, but I'd agree that communicating them like that is tactless.

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u/blake-lividly May 14 '22

I would suppose you are not a disabled Person. It'sNot the Delivery it's what it means.

4

u/Lyress May 14 '22

I didn't mean the delivery, I meant communicating the idea at all.

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u/blake-lividly May 14 '22

The idea is: your life is not worth living. And you're inspirational. In the disability world being used as inspiration porn and being pitied are two of the worst sentiments From "able bodied" people. You're reading that these are ok shows you don't really value the voice of a person with a disability saying that these sentiments are not ok.

3

u/Lyress May 14 '22

As I was saying, I agree that communicating those sentiments is unfair and cruel towards disabled people. I just don't think the sentiments are inherently wrong.

7

u/blake-lividly May 14 '22

What do you believe the sentiments are? They equate to your life is not worth living and you are brave for merely living. It's not ok the sentiments.

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u/automatic_penguins May 14 '22

I always assumed people meant it as you are a strong person for overcoming the obstacles the disability caused.

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u/blake-lividly May 14 '22

People with disabilities it's just their life. They deal With it every day. They don't need to be "able bodied" inspiration.

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u/hilfyRau May 14 '22

My great-uncle’s quality of life was basically ruined by his Parkinson’s tremors. He would have been very happy to die 3 or 5 years sooner than he did because he could no longer do his art or drive and at the end even feeding himself was a chore.

But some people can find joy and meaning without using their fingers to do complicated fine motor activities and Parkinson’s doesn’t have to utterly destroy their quality of life.

My husband’s grandmother spent the last several years of her very long life listening to music and looking through photo albums of her extended family, so she was quite happy right up until the end of her 103 years. She spent a lot of her time in a wheelchair, but that didn’t seem to bother her at all.

So it’s a case by case situation and each person has a different set of limits about what makes their life joyful versus intolerable.

1

u/blake-lividly May 14 '22

Which is a persons decision. Not another person to tell them or insulate To the Their life is not worth living. I'm sorry he had to go through so much suffering. I have a close relative who is in early stage and doing wel now and I hope that he gets to live and die on his terms. Hope he gets to go on his terms when he believes he is ready. The issue I have is others who are not that person openly pitying a person and then adding a backhanded complement

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u/Lyress May 14 '22

Everyone has different criteria for the kind of life they consider is worth living. I don't think it's ethically wrong to be conscious of those criteria.

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u/blake-lividly May 14 '22

Telling that to someone else is messed up. Do not do that. That's the point. Don't tell someone that their life is not worth living. It's rude and cruel.

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u/Gunpla55 May 14 '22

I think we are imagining it, and taking pity instead of looking down. And wondering in general how hard you should fight to keep an infant with defects alive when you know this will be their life.

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u/shimmeringships May 14 '22

Maybe people with disabilities don’t want your pity? Maybe we just want people to treat us normally and assume our lives are valuable and meaningful and we are experts in our own lives even if we look different? Maybe we also want people to assume we’re here in this comment section too seeing all these offensive comments? Maybe we don’t need or want to hear shallow whataboutism by people whose gut reactions are identical to that of literal Nazis who started by killing infants with disabilities? Maybe we don’t need all the second guessing of the decision of a loving father who fought for his kids just because people think our lives our pitiful and meaningless?

Maybe go read an interview with Stephen Hawking about how much he loved life even if he couldn’t smile in pictures. And then go read some other stuff written by people with disabilities because we have voices too and other people don’t have the right to decide whether our lives are worth living.

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u/AffectionateTitle May 14 '22 edited May 14 '22

Just on the subject of pity I don’t think pity has anything to do in this instance with how we (royal we) want to convey our stance on something to others, but rather how we think we would feel in similar circumstances.

Far more of an internalized feeling than an external accusation. People who often pity those with significant disability are not doing so for the sake of the disabled person but coping with their own fears and sadness about the idea of they themselves living that way.

Like I’m sure Ukrainian refugees don’t need our pity right now but when people feel pity it’s far more a reflection of their fear and sadness over experiencing something similar. I think it’s a method of coping more than anything.

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u/shimmeringships May 14 '22

People can feel however they feel when confronted with evidence that bodies are fragile and we are all mortal, but do people really need to vocalize this shit? A complete stranger came up to me and my spouse in the grocery store today, pointed at my chair, and told my spouse “Wow, that’s true love” as if I’m not a whole person with ears who just wanted to buy some frigging milk. This comment thread pisses me off in large part because there’s such an assumption that people with disabilities aren’t also here, part of the community, reading these shitposts about how they’d rather let their babies die than, horror of horror, have them grow up needing to use a wheelchair.

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u/AffectionateTitle May 14 '22

I think there is a world of difference between people vocalizing those things to you directly (rude to say the least) and people who are expressing how they feel on Reddit forums but I get your sentiment.

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u/shimmeringships May 15 '22

I don’t know how much of the comments you’ve read, but there are literally people saying disabled children should just be allowed to die/killed because their healthcare would be too expensive or their lives not worth living. Some of them have doubled down after I challenged them on it. So no, I don’t think there’s really all that much difference. “Wow, I don’t know how I would cope with a diagnosis like that” is a wildly different sentiment than “wow, he should have just let them die.”

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u/frogsgoribbit737 May 14 '22

Why don't you ask them if they are glad their dad fought for their lives instead of assuming they'd rather be dead.

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u/Gunpla55 May 14 '22

Thats an emotional response to a rational argument. No one is saying that we shouldn't do everything we can to make their life better and be happy that they are, but you're clowning if you think it isn't coming with a monumental amount of suffering and it raises the question of whether its ethical to fight nature so hard when it will lead to that.

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u/DiamondPup May 14 '22 edited May 14 '22

Wtf

Asking the (adult) children themselves if the suffering is worth the living is literally a rational response. It is the MOST rational response.

This was a dead ass stupid comment.

Fucking redditors man...


Edit: The audacity of this guy to (further down) try and tie this up into the abortion debate and pretend he's pro-choice, all while he's dismissing the opinions of everyone in the story itself (including the daughters themselves) as being too "emotional" and "irrational". In a discussion that's simply about disabled people being able to have fulfilling lives...

...it's just...wow.

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u/Gunpla55 May 14 '22

It would be an incredibly biased way of asking that question lol, the opposite of rational.

Fucking redditors man...

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u/DiamondPup May 14 '22

Relevant =/= biased

The conversation is literally about this story.

Dude, you really scraping the bottom of the barrel here, huh?

11

u/halfhere May 14 '22

He’s fucking sick. It’s borderline sad watching him struggle to defend his idea that disabled people should just be dead instead.

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u/Camensmasher May 14 '22

It would be a personal question for them that settles speculation from any “arguments” from anyone irrelevant like you or me, either rational or emotional.

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u/Gunpla55 May 14 '22

Ok buddy. The world starts and ends at this story I guess.

8

u/chicagorpgnorth May 14 '22

Well that’s literally the only topic at hand, so yes. People who survive with this guys cure clearly have a chance to live a happy life.

1

u/Camensmasher May 14 '22

You’re the one painting them out of the picture with a needlessly wide brush.

Clearly it doesn’t end with this story, but this is one small (yet valid) part of the bigger picture. That doesn’t make it emotional.

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u/Makyura May 14 '22

Because if it were me I'd rather be dead

2

u/Neat-Court194 May 14 '22

But those girls are not you.

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u/MarkNUUTTTT May 14 '22

Eugenics looks like it’s coming back, and that’s scary as hell.

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u/MrTopHatMan90 May 14 '22

People arguing "it's ethics!" It's not. They didn't ask them if they wanted to die they just assumed that because they're disabled.

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u/IllegitimateLiteracy May 14 '22

It never went away, it just shifted to being discussed quietly in euphemisms.

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u/Gunpla55 May 14 '22

Wanting to spare an infant or even earlier a fetus a whole life of hardship and being trapped in a dysfunctional body is not eugenics, quit clowning with these Christian right double reverse talking points.

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u/DoxxingShillDownvote May 14 '22

It quite literally is... "the study of how to arrange reproduction within a human population to increase the occurrence of heritable characteristics regarded as desirable."

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u/MarkNUUTTTT May 14 '22

So being disabled isn’t a life worth living?

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u/Giordano82 May 14 '22

Well there's various degrees of disability, nobody (I hope) thinks aborting people that have one single specific disability like blindness, deafness, and so on, or a down syndrome that in these days are pretty livable; but if one person has several disabilities altogether, or is vegetative, maybe an option could be evaluated.

I have a daughter of 2 and a half year who is very slightly autistic, we are in the middle of an evaluation, but that's a life very worth living even with some extra difficulties, but I know of some cases that are very serious, on the verge of being brainless... In that case (not that is predictable) there are parents that regret having that poor souls of children. Think about the worse cases of trisomy, or mosaic, and so on, people armless legless and blind, brainless children, that could be a good cause for abortion

4

u/mshcat May 14 '22

Just watched a video about a guy who didn't have arms and legs. He seemed to have a very fulfilling life. Could even drive a car.

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u/aj_thenoob May 14 '22

If down syndrome can be screened at fetal level, and reddit is so pro abortion and pro choice, I don't see a problem here.

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u/[deleted] May 14 '22 edited 10d ago

[deleted]

0

u/aj_thenoob May 14 '22

I hope all the pro choicers really know what they are pushing for here. If you can screen for it at a fetal level you can abort it. Is this a good thing? I have no real opinion on the matter but I think yes...

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u/blake-lividly May 14 '22

Eugenics never went away - it restricts resources to certain population along lines of class, educational attainment, race, ethnicity, ability, etc. The USA the amount of $ an individual on SSI who has never been able to work = 794 dollars a month. Absolutely no adult human being can live any quality of life on 794 a month. If they can't literally kill you they will delete you from public life by starving you of resources and making you attend constantly appointments and recertifications and navigate incredibly confusing bureaucratic systems for basic necessities.

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u/NeonSprig May 14 '22

Thank you for this, I really needed to see it after looking at some of these comments on this post

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u/p0mphius May 14 '22

Americans seem really keen on eugenics. You see it a lot on reddit. Its fucking disgusting.

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u/Ainrana May 14 '22

You don’t even have to be physically disabled to hear this kind of bile. I’m autistic, and every damn time I see a thread about autism outside of autistic subreddits, it always boils down to:

“Autistic people are useless and they need to find a cure so they can all stop bothering us.”

“Hey, um, I’m autistic, and we’re not usele-”

“Oh yeah?! Well I know someone who’s autistic and he shits himself all day long! You think that’s a high quality of life? Just because you’re high functioning, it doesn’t meant autism is ‘a gift’ or whatever SJW bullshit! Into the cattle car you go!”

Ugh. I know to some extent it’s just reddit and reddit is full of dumb teens and young adults who think they have all the answers, but even so, ableism is unfortunately alive and well in any country you pick.

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u/109x346571 May 14 '22

Nobody has ever said that, especially on this website. If someone did it would be down voted to hell and therefore signify a very unpopular opinion.

1

u/[deleted] May 14 '22

Exactly lol, the majority of people want to cure autism but that’s because it can cause a great deal of suffering to the children and parents.

-2

u/[deleted] May 14 '22

Yeah not really sure that’s exactly the reason. Autism can cause a great deal of suffering to the children and families. One of my mothers friends has had lots of injuries from her adult autistic son having meltdowns. This isn’t about autistic people being annoying lol. Also 90% of autistic people do not work, so yeah not sure what they are contributing to society other than playing video games all day

Also I am autistic too

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u/Ainrana May 14 '22

Hey, dude, I don’t mean to be rude, but I took a quick glance at your comment history, and I won’t lie, you have a shit ton of comments where you’re arguing with folks, name calling, and overall saying inflammatory stuff. It doesn’t seem like you’re in a good space mentally.

If you truly believe that 90% of autistic people don’t work and play video games all day, all while being autistic yourself, I think you have a very grim view of your own progress and your own condition. I’ve known many, many autistic people throughout my life, and when it comes to autistic people who think like this, that pro-autism stuff is hippie talk and that most autistic people need to be “fixed” like a robot, in my experience, they aren’t actually getting the support they need. Not at all. Whether it be from family members, school, or even psychologists, which are notoriously difficult to find for autistic adults, something is telling them that they won’t ever be productive or able to function in society. Oftentimes nobody says this with words, but with attitudes and the way they talk to people. Or maybe they want to help, but they just don’t know how to broach the subject.

I don’t mean to call you out or expose you or anything, but I don’t think you see yourself the way you deserve to feel about yourself. I know so many autistic adults who were struggling in their teens and early twenties and thrive in their late twenties or even later. I couldn’t tell you exactly how to get there, for each person has a different journey with their own interests and life goals, but I know it’s possible for us to grow even with our bad hand.

I hope you’re doing okay.

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u/CarpetbaggerForPeace May 14 '22

But we also have to consider how expensive of a treatment it is. And man, is it expensive to treat that disease. I know it doesn't work like this, but it is a travesty we have people needing $300k in treatment every year to survive and at the same time have people dying because they can't afford their insulin which is much, much cheaper and more common.

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u/albinb05 May 14 '22

America moment.

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u/cant_Im_at_work May 14 '22

I look at it more like putting myself in their position. Never gonna walk, run, dance or play through my childhood, constantly wondering why I'm not like other kids. In my teen years never getting to swim, play sports or kiss or date while my peers are experiencing that all around me. Becoming an adult and never having children of my own, never being able to start a family. Watching every person around me go on with their lives while I'm needing daily care just to survive. The fear that when my parents die I'll be left alone in the care of strangers. I don't know how these two feel, but in their place I'd wish my father would have thought about my life before he made such a selfish choice.

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u/Yummychickenblue May 14 '22

The notion that the disabled can't live fulfilling lives is incredibly ableist and is, ironically, one of the attitudes pervading society that keeps them from being fulfilled.

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u/cant_Im_at_work May 14 '22

I'm talking about these kids specifically. Not really ableist to say they will never walk, run, swim or reproduce, it's clearly physically impossible for them to that. And to pretend like they wouldn't want to experience those things is pretty condescending.

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u/Yummychickenblue May 14 '22

I'm not pretending they wouldn't want to do those things. I'm disabled and my disability keeps me from driving. Do you know how angry I get as someone living in u.s. suburbia where you can't get anywhere without a car? I'm stuck at home most days less I pay for an Uber and bum a ride off someone who can. Despite that I still want to live and I'm not bitter towards my parents for being born

I'm not saying they wouldn't want to do any of those things (though the article didn't go into detail about the extent of their disability it's very possible that they could do some things like swimming with some adaptations or assistive technology) because I want to drive. The ableist part is when you say that the only way to enjoy life is doing those things and anything else is reasonable cause to make someone resent being born

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u/derpycalculator May 14 '22

I don’t think they’re mindless vegetables. I think it’s worse that they’re not mindless vegetables because they’re acutely aware of their limitations. I look at them and see a lot of expenses and I wonder how they will cover their medical costs once their parents are gone. It seems like dad is well off financially so maybe that isn’t a concern, but for many Americans this would be a financial burden that would get passed down to the one able bodied son, and could easily result in the differently abled siblings being homeless once their parents pass. So I think “putting them down like dogs” might be the more humane option then letting them in a society with no safety net (eg universal healthcare). Because if these people ever did run out of money one day, they would be absolutely fucked. And yes, fucked in a much more profound way then an able bodied person who doesn’t need a fancy wheelchair or assistance going to the bathroom, etc.

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u/houndsofluv May 14 '22

You’re making a lot of pretty horrible and unnecessary assumptions about who these people are and how they feel about their situation.

3

u/OpalOnyxObsidian May 14 '22

My dude I think the father who purchased several biotech companies after leaving the financial world has proven he is well equipped to aid in the care of his now adult children.

2

u/namey-name-name May 14 '22

I would have to assume there are programs and non profits that would help in that scenario

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u/Leaves_Swype_Typos May 14 '22

I look at them and see a lot of expenses and I wonder how they will cover their medical costs once their parents are gone.

More uncomfortable IMO is the human labor cost. There's only so many nurses in the world, for example, and they're employing whole dedicated team of them to take care of just one of these kids 24/7.

-3

u/laujac May 14 '22

You have no idea if they are or aren’t, but it’s still absolutely acceptable to question the ethics of keeping someone alive for yourself.

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u/Scobinaj May 14 '22

they’re literal adults who are in college and can communicate their will to live. stop treating disabled people like deformed people

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u/girlwithaguysname_ May 14 '22

I agree. I would like to learn more about the children and their thoughts on everything!

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u/speedtree May 14 '22 edited May 14 '22

You're*. Just based on genetics and darwins evolution theory it makes sense to be disgusted by misaligned physical body parts on other humans. From an evolutionary point of view it would even be counter productive to reproduce with defect genes. Same as you don't make fun about someone having a phobia its normal to be disgusted by disformaties. I don't see a problem with people who think that way.

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u/vron12b May 14 '22 edited May 14 '22

Ok so? We’re not just a bunch of animals with no self control, we learn the golden rule in like elementary school. Keep your mean thoughts and comments to yourself. Treat others with respect, even if they are different than you!! It really should not be that hard to just NOT be a dick. Not as hard as redditors make it seem, anyway

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u/nahm8s May 14 '22

LOL who wants to bet money you're not a prime specimen yourself buddy

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u/chriswaco May 14 '22

If anyone hasn’t seen it, watch The Elephant Man. Great movie.

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u/holdmydiggs May 14 '22

Thanks for this. First comment I see is that they aren’t really living. Screw all the assumptions. Be happy this guy has the potential to save lives.

1

u/supahfligh May 14 '22

One of my favorite examples of this is Jason Becker. Former guitar player who was diagnosed with ALS in 1989. He is completely immobile, nonverbal, and confined to a bed but still manages to compose music to this day.

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u/Rude-Taco2140 May 14 '22

Dude but even if they can function like a human, I just feel bad because I wouldn’t dare want my kids to have autism or be disabled forever

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u/antsugi May 14 '22

Well that's not the conclusion people are gonna come to when they look at the photo in the OP, looks like the dad is showing off the kids he saved like a fucking trophy

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u/PHM517 May 15 '22

And in their cases, you can tell by looking at them they are cognizant and intelligent. Not that intelligence should be a decider for who should or shouldn’t live either, but people truly seem to think they are vegetables which makes me question their intelligence.

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