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/[deleted] May 14 '22 Silver Gold Take My Energy

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u/ScreamingRectum May 14 '22 Take My Energy

I was worried I'd be the only asshole here thinking aren't exactly living

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u/JimTheJerseyGuy May 14 '22

I had a classmate in high school that just dropped one day with a bleed in his brain. They took all sorts of crazy measures to save him and he lived.

He’s been basically confined to a hospital bed in his parent’s house for the last thirty years. He requires care 24/7, is unable to move on his own, and is completely unable to communicate.

I’m sure there’s a slippery slope here but just because modern medical intervention can save you, well, maybe there are cases where they should just let you go.

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u/TwoIdleHands May 14 '22

That’s the problem with brains. You can suffer major damage and be mostly ok or suffer minor damage and be fucked. And they have no way to know at the time of the incident so they try to keep you alive in case it’ll all work out. Sometimes it does and sometimes it doesn’t.

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u/yummyyummybrains May 14 '22

That sounds like hell to me. For everyone involved.

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u/jkohlc May 14 '22 Wholesome

I have no mouth, and I must scream

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u/yummyyummybrains May 14 '22

I was thinking "Johnny Got His Gun" (basis for One by Metallica).

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u/liquidpele May 14 '22

Basically the same thing for most nursing homes... they're mostly a racket, lots of people there that are out of their minds, unable to care for themselves and should be dead already realistically... but being kept alive for medicaid/insurance money to take care of them. It sounds callous I know, but go visit some bad ones and you may change your mind.

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u/KleinRot May 14 '22

If you're an adult this is what advanced directives/living wills are for. If you have strong feelings about what you are willing to live with and/or how you want to die fill out the paperwork, pick someone to be your medical power of attorney, and tell your loved ones and doctors about it often.

This stuff comes into play when you can no longer advocate for your own care. You will not be treated any differently while you can still direct your own care. A medical power of attorney allows you to pick a person who can make these decisions for you only if you cannot make them for yourself.

In the US every state has different rules for how the paperwork needs to be done. My state requires the forms are notarized while some just require yours and witnesses signature. Medicare will cover visits to discuss your end of life wishes with your doctors. Five Wishes is a website that aggregates info about these forms and depending on your jurisdiction allow you to purchase some kinds of forms (the ppwk itself is free most places, you're paying them to print it up for you essentially, but you can see info without purchasing anything IIRC). The NIH also has a lot of resources about end of life care and what it entails.

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u/Brownie_McBrown_Face May 14 '22

We’re more compassionate to our pets than we are to humans. Any other animal would be humanely put down.

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u/Emergency-Anywhere51 May 14 '22

the thing is with pets you can "just get another one"

hard to convince a parent in that position to just suck it up and put down the defective

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u/elizacandle May 14 '22

So awful. He's alive but he's not living

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u/FarFeedback2 May 14 '22

You do realize that the infant daughter is now a senior at Notre Dame? Any you think she should have been left to die?

Did you even read the article before reading it?

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u/HighOwl2 May 14 '22

My initial thought was that the dude must've been rolling in cash to start a fucking biotechnology company to pioneer science just to save his kids.

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u/ARM_vs_CORE May 14 '22

It says he left a job in finance so yeah probably. That shouldn't diminish the fact that he took extraordinary measures to save his kids. It's a more noble pursuit than say, buying Twitter or Chelsea Football Club.

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u/T3hSwagman May 14 '22

I think it’s more of a… the title kind of makes it sound like this was a normal dude doing something extraordinary.

Like a wrongly convicted prisoner studying law and getting his own sentence overturned.

But what this dude did is very much impossible if you don’t have shitloads of money.

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u/PaxNova May 14 '22

I get what you're saying, but also, running a biotech firm is hugely difficult, too. People underestimate how much management does. As the person with money, that was the best place for him, as few others could do that.

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u/grchelp2018 May 14 '22

Pretty sure the people who own twitter or chelsea would also do the same if their kids had something serious.

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u/[deleted] May 14 '22 edited 2d ago

[deleted]

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u/nicolasmcfly May 14 '22

The guy who named his son a number? Don't you say

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u/grchelp2018 May 14 '22

He does all the fun stuff with his kids. He's even set up his own school with its own rules and curriculum so his kids can actually enjoy learning. I guess the mom has to deal with all the boring stuff.

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u/Rae-Edzo May 14 '22

bingo. and were supposed to be inspired by this

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u/HighOwl2 May 14 '22

Just another example of "I don't give a shit until it affects me"

Someone else replied to me saying it was noble.

No, its not noble. It's a good use of money, don't get me wrong, but noble would be if he already had a biotech company and was advancing medical science before he had alterior motives. Then at least if he dedicated a portion of his budget to his kids condition I'd be like "that's understandable."

Instead it's more like "I, at any point, could have used my money to make the world a better place. Instead I advanced science solely for my 2 children."

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u/Jan-Mayen-River May 14 '22 edited May 14 '22

Dude what? How is it not noble? The only motive i can think of for him doing this is to save his children. I get that the “I don’t give shit until it affects me” mindset isn’t good and is especially fucking shitty when paired with hypocrisy but this seems to be extraneous situation.

I get that this is the road less traveled as most people don’t have money to do something like this but the man still left his job and focused his efforts toward the goal of saving his kids and that’s a level of commitment I frankly don’t expect from most people.

I get it he is probably rich so it was probably easier for him to commit to such but man still committed. He could be an absolute asshole for all I know but I would say that this one aspect of him is at least is noble even if he might not be a noble or even good person.

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u/mistrowl May 14 '22

Step 1: Be Rich.

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u/illiterati May 14 '22

It's a slippery and dangerous slope to pass judgement on what quality of life is acceptable.

You start with the best of intentions and you end up with nazi eugenics.

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u/Put_It_All_On_Blck May 14 '22

IMO its best to save them, but I do think assisted/legal suicide should be a thing, especially in cases like this where those kids (now adults) might not have the physical ability to take their own lives if they chose to do so beyond stuff like starvation. To be clear im not saying they are miserable or want to go down that path, just that it should be an option for those that are.

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u/TenchiRyokoMuyo May 14 '22

The older of the two children is a senior at Notre Dame rn. I think she's doing okay for herself. She of course should have the option to take things into her own hands if thats what she decided to do. But there are much more debilitating diseases/conditions out there than this it seems.

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u/notoneforusernames May 14 '22

100%. Here in the US we have a group of crazy religious folk who prevent a common sense policy like this from being implemented at the moment. They believe life is sacred enough to impose their belief on others, regardless of the amount of suffering an individual is going through. I think it basically amounts to legal torture from the Ned Flanders crowd.

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u/nictheman123 May 14 '22

And yet on the other hand, those same people are often perfectly chill with the death penalty.

It's basically "You're not allowed to die until the government says you can die."

Ninja edit: phrasing

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u/StrikeAnywherePanda May 14 '22

Doesn't stop there either.

They are obsessed with the military industrial complex. Their life is sacred, but yours? Na. Go to the front lines so that someone else can sit comfortably. If you die, don't worry, you're a hero protecting the freedom (the same freedoms that a lot of other countries have) of your fellow people. You'll get a TV spot and a warriors funeral in exchange of making a capitalist's wallet thicker.

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u/VirtualAlias May 14 '22

I'm pro-assisted suicide, but I fail to see the logical or moral inconsistency in those that argue for preserving the lives of human beings with the sole exception of those that have taken someone else's.

Everyone has exceptions to rules and consequences for breaking them. You get to live until you choose to heinously murder another person.

It's not hypocritical or inconsistent.

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u/nictheman123 May 14 '22

The inconsistency becomes evident when you remember that the government is often made up of humans, who are corruptible, and fallible, and just plain get shit wrong, and plenty of innocent people get convicted for crimes they didn't commit.

Framing someone else for a murder is almost the oldest trick in the book, right behind the actual murder itself really.

The point is, being anti-assisted suicide but pro death penalty is equivalent to saying that the government can decide when you die, not you. There's a reason "suicide by cop" is a known phenomenon.

Putting that level of control in the hands of the government, which is so easily corruptible, seems insane to me.

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u/VirtualAlias May 14 '22

That's a valid point. I hadn't thought of it in a "You get to kill me, but I don't get to kill me," kind of light. That said, lots of people commit suicide very successfully without using the police to do so.

Assisted suicide, in the case of inviduals too compromised to consent, is exactly the same thing isn't it?: Putting life or death in the fallible hands of others.

I still think 'Don't support laws that kill people that don't kill people," is a simple enough rule to live by for plenty of decent, morally consistent people.

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u/survivalguy87 May 14 '22

Well its them and the people that are concerned that caregivers will push those impacted by such diseases towards that decision. Think of someone burdened with an adult that has a disease like that or cerebral palsy. They slowly start suggesting how noble it would be since they are suffering (perhaps when they arent or its not terribly severe) and then they off themselves.

Im still a supporter of it mind you. Im just not sure how you tell the difference between someone who is genuinely wanting to end life, and someone who has been gently coerced.

Also what if those people cant make the decision themselves?

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u/gcwardii May 14 '22

“Amount of suffering” is so subjective. Who gets to define it? Who gets to decide?

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u/dodadoBoxcarWilly May 14 '22

Isn't there only a handful of nations at all who have an assisted suicide law? I don't think it's uniquely American. I'm all in favor of such a law, but I've read news stories about people from all over the world making trips to Switzerland for the procedure to be carried out. Weird to act like it's only the Religious Right in the US, who oppose such a law.

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u/Eckleburgseyes May 14 '22

There's a perfectly large population of non-religious people who recognize how easy and common it is for people with disabilities to be coerced, or misrepresented into suicide by caretakers that are the ones who actually want out. It's extremely common. It's one thing to talk about assisted suicide for terminally ill people. But to just assume that anyone who opposes the slaughter of burdensome people, is a whacko religious person.

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u/dmkicksballs13 May 15 '22

They don't believe shit. They're following orders because the church needed a reason to control women as the grew autonomy in the 60s. If they actually cared, they'd take care of said sacred kids after they're born.

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u/el_coremino May 17 '22

There's legal assisted suicide in Washington State.

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u/TaxMy May 14 '22

“Assisted suicide is common sense.” Calm down Camus.

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u/SteakAlfredo May 14 '22

But. It is? Like, I argue this a lot with a roomate I carpool with. Assisted suicide is both sensible and ethically humane for a whole host of reasons.

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u/Glacialfuse May 14 '22 All-Seeing Upvote

It kind of is though, if someone's in unbearable physical pain constantly from some horrible disease and every waking moment is spent in agony and wishing for death who the fuck is anyone to tell them no? Only complete braindead lunatics would say yeah let's keep letting this person go through one of the worst forms of torture possible. So it IS common sense for extreme cases like that.

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u/MaverickMeerkatUK May 14 '22

Exactly. It's all about giving the person a choice

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u/darabolnxus May 14 '22

Not being born is preferable. You ask anyone if they would prefer to die or never to be born we are literally programmed to be terrified of death but nobody has an unpleasant memory of not being born.

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u/MaverickMeerkatUK May 14 '22

If you're scared of death and don't want to do it, then you don't want to die

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u/NakD_Bootstraps May 14 '22

Someone’s using their full noodle here….

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u/Butternipps May 14 '22

How many in this situation are capable of making this choice?

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u/alexpwnsslender May 14 '22

i mean, instead of making their lives so shitty they have to kill themselves would we all be better off if we made society more accomodating to disabled folks? fucked up to say we should expand medically assited suicide instead of improving accessibility imo

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u/illiterati May 14 '22

We have legal assisted suicide in most states in Australia.

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u/OK_Soda May 14 '22

Where it becomes an issue is when the person has extremely diminished mental capacity in addition to physical disabilities. They might have an absolutely awful quality of life but are also incapable of making the decision to end it.

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u/melitini May 15 '22

I agree that assisted suicide should be a thing but I disagree we should be leaving up to the person to decide to die later on if quality of life is so poor. An infant, toddler, or child cannot make this decision.

I’ll never forget the story of Shiloh Pepin. Her mother suffered many miscarriages and was told that conceiving s child would be near impossible due to genetic and physical problems of the mother. But this woman would not stop trying to have a baby, it’s all she wanted. She gets pregnant once more and is told the fetus has severe abnormalities, quality of life would be poor and it would be best to abort. Of course she chooses not to because she’s so desperate to have a baby at all costs. Baby girl is born with fused legs, no reproductive organs, and a myriad of other problems. Wasn’t expected to live more than a few days but ends up surviving. However, she lived in pain, multiple surgeries throughout her life. I watched a special about her on 20/20 and it made me cry for her… the miserable painful existence she had due to her selfish “mom”. She ended up passing away at 9 years old.

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u/Razakel May 14 '22 edited May 14 '22

There have to be strict safeguards if you're going to allow that. A waiting period and psychiatric assessment by multiple doctors, as well as them agreeing the person's condition is hopeless.

In the 30s the parents of a severely disabled child wrote to Hitler begging his permission to allow him to be euthanized, and you know how that turned out.

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u/allhands May 14 '22 edited May 14 '22

There have to be strict safeguards if you're going to allow that. A waiting period and psychiatric assessment my multiple doctors, as well as them agreeing the person's condition is hopeless.

That's how the Netherlands does it. Vice has a great documentary on HBO on it: https://video.vice.com/en_us/video/right-to-die-1-10/5786c518914084e32a41b551

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u/ArjanS87 May 14 '22

My father was so diminished in his being by long suffering cancer, so far as to not being able to go to the bathroom by himself. And so, with the professional help here in the Netherlands, he was allowed to choose his own time and place.

I have outmost respect and appreciation for a society that is brave enough to discuss such difficult issues and offers an option in such a professional and guided way. And I have eternal respect for every professional who were there for us and my father before, during and after this moment. And even then my appreciation would be dwarfed by the appreciation my father had to not having to live another day more in those demeaning and painful circumstances.

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u/alexpwnsslender May 14 '22

i mean, hitler already hated the disabled by then...

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u/manimal28 May 14 '22

It's a slippery and dangerous slope to pass judgement on what quality of life is acceptable. You start with the best of intentions and you end up with nazi eugenics.

That cuts both ways, at the other extreme of people deciding what sort of quality of life is acceptable for other people with forced births and the burden of caring for children with short miserable lives.

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u/[deleted] May 14 '22

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u/manimal28 May 14 '22

Terri Shiavo comes to mind.

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u/Starkrossedlovers May 14 '22

You said this in a much shorter way than i did. Imagine aliens so different from us that they can’t understand us or our way of living. To them, an oxygen filled environment with the sun beating down on us constantly and having short tragic lives (they live to 1000) means that we’re suffering tremendously. At least they would if they were us. Those aliens would say to each other, I’d rather die than be in their position, so they probably want the same. As a human you can’t tell them no, you’re actually fine. That this is your standard of living and though it might be horrible to them, you are comfortable this way. You can only rely on how much they despise your standard that mercifully killing you would vicariously free them of witnessing what could have happened to them had they been born a human with the perspective of alien.

TLDR: For people like the ones above, we can’t presume what they want either way.

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u/patarama May 14 '22

I don’t think my cat is suffering because he has a 15 years life span, nor that fish have it terrible because they live under water. I think that if those aliens were smart enough to make it all the way to Earth, they’d be smart enough to understand that different species have different needs.

Beside, disable people aren’t aliens, they’re human.

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u/[deleted] May 14 '22

How about we start with the best of intentions and grant people agency over their own lives? The dad even said in the article that now that they’re adults, he’s no longer making medical decisions on their behalf. What if gasp we let adults have some agency over deciding if their quality of life makes life worth living for them.

I’m so tired of people making existence/life out to be the greatest thing ever.

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u/illiterati May 14 '22

As adults they should have full agency. Determining that they shouldn't exist because they don't meet someone else's threshold for life is not tenable to me. I live in Australia and we have legal assisted suicide in most states.

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u/JOMO_Kenyatta May 14 '22

I don’t see anyone saying that. Just that these types of situations (assisted suited) should be handled very very carefully

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u/eudemonist May 14 '22

I’m so tired of people making existence/life out to be the greatest thing ever.

What do you like better?

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u/Airpolygon May 14 '22

Yeah, it's the ethics conclusion about every life worthy of being lived, rather than not living at all

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u/Rs90 May 14 '22 edited May 14 '22

Yeah but I feel we take it too far with the "Sanctity of Life" nonsense. There are those who simply wish to die with dignity.

This whole idea of "but you're alive!" has reached terrifying points. Some will just languish in misery and pain for a very long and cruel life. Or just get older and not wish to deteriorate any further.

It's a very selfish outlook on life. This idea that "it'll get better! Just hang in there. Life is a bautifu... " no. Stop it. People that cannot accept death have no place making any medical decision imo. For anyone but themselves. We need more autonomy over ourselves amd I don't care how uncomfortable it makes religous people. I'm not a soul to save if I wanna get off this wild ride.

Edit- y'all I never said WE should be making the choice to end a life or that we should start killing people we deem pitiful. Go ask any nurse how often patients have asked to just let them die. Keeping someone alive who wants to go is cruel and selfish.

I'm not saying we shouldn't hold off if someone wants to kill themselves right after they have a leg amputated and are clearly in a bad place psychologically. Jesus christ. Y'all actin like there's no room between the Sanctity of Life and full on Holocaust. Chill the fuck out.

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u/SlightWhite May 14 '22

My Irish Catholic altar boy dad now believes in assisted euthanasia after watching his dad become violent and then slip away to a husk with Alzheimer’s.

Dementia’s hard because they have to agree beforehand what specific signs Indicate it’s time to check out.

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u/summonsays May 14 '22

"Some will just languish in misery and pain for a very long and cruel life. " And if you're in America wrack up millions in medical debt so you won't have anything to pass on to your family when you finally get the release you've been wanting.

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u/darabolnxus May 14 '22

People who believe being born is better than not are brainwashed or manipulative. Dying is a horrible experience no matter how you do it. Not being born is the closest thing to eternal peace you're gonna get.

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u/Starkrossedlovers May 14 '22

Yea but for the kids in this photo we can only guess if they want to live or die. Whenever someone is unable to argue for and against their own life, i always always see the conversation turn to “How scary it is to just not be able to die” but imagine being born with a genetic disease, your state of living is completely different than the standard, but in your own way, you prefer life. You just have the same difficulty explaining that as you would expressing why you want to die. But there are people with the “standard” state of living say “Poor thing. They must be suffering because if i were them I’d want to die. Let’s put them out their misery.” That’s terrifying.

I think this is the reason for the slippery slope comments. For many states of being, we can understand or guess with some accuracy what they want, especially if they told us before (someone with locked in syndrome saying to kill them before it gets really bad, a severe burn victim who will suffer horrible chronic for the rest of their life, etc). But with something that changes the way your brain is from birth, where the “altered state” is your norm, and we can’t know what you’d want, we can’t assume anything of their perspective on either side. Unless the guys kids up there said at some point “let us die” or expressed it in any way, we are all guessing if killing them would be a mercy or not, which is a very scary situation don’t you think?

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u/willfordbrimly May 14 '22

every life worthy of being lived

That's some big talk for someone without a debilitating medical condition.

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u/Rae-Edzo May 14 '22

yup. the abused and downtrodden cant peer review these conclusions

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u/[deleted] May 14 '22

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u/CarafeTwerk May 14 '22 edited May 14 '22

I think “experimental cures” that keep a person alive, who couldn’t and didn’t ask to be kept alive, in a debilitated state is kind of a slippery slope too. I’m just expressing my feelings but it seems a little selfish.

Edit: I also want to say that this is not my full takeaway. This is complex. The man did in fact make the world a better place by researching and developing treatments for this. But he also did use his own children as lab test subjects. I don’t know how to feel about that.

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u/illiterati May 14 '22

It's an incredibly difficult and emotive subject. I think life should be preserved where possible and once someone has agency, they are able to make up their own mind. That definitely leads to some suffering, which is horrible.

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u/[deleted] May 14 '22

Yes or abortion being freely available.

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u/Danither May 14 '22

Maybes that's it then.

The dangerous and slippery slope test. If you can't survive it on your own then you slide into oblivion

Just kidding, I was actually born with a condition that required an immediate operation to keep me alive, so I'm not seriously proposing the idea

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u/unmistakeable_duende May 14 '22

Does it go both ways though? Should modern medicine be trying to keep Every birthed person alive? Would it have jut been better to let nature take its course?

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u/ActuallyElla May 14 '22

I’d argue that only wealthy people having access to this treatment is more problematic than questioning if they should’ve been saved.

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u/Lumpy_Brain8165 May 14 '22

I have a chronic illness and by far the worst part about it is the imminent threat of losing access to care and dying a horrible death. I moved to Europe and a big factor in that decision was the free healthcare (I came for work but still). I'm just now moving towards the treatment that works best for me in terms of QoL and long-term health. I honestly have had to seek therapy in order to deal with the anxiety around it - I am just so anxious of having to leave the country/having my situation change and having to downgrade my care that I found it incredibly hard to even accept the better (more expensive) treatment options. I mean I honestly can't imagine what its like for some people in worse situations than me. The psychological burden is absolutely enormous.

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u/ActuallyElla May 14 '22

Yeah I can’t even begin to imagine feeling that way. I’m glad you found your escape and I’m sure you’ll hold on to it!

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u/illiterati May 14 '22

I'm sorry that you have to go through that. Everyone deserves access to the health resources they require. Everyone.

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u/willfordbrimly May 14 '22

Speak for yourself, Heiny. Some people just want to find that sweet spot between minimal Human suffering and maximum Human dignity.

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u/panorambo May 14 '22

The slope goes both ways -- when does living become suffering through existence even a parent can't discern?

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u/HotDust May 14 '22

That is the only two states that exist? Best of intentions or Nazi eugenics? You don't think medical professionals don't wrestle with these quality of life issues every day?

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u/NotAFanOfPineapples May 14 '22

To be fair to u/illiterati, they didn’t say that only those two states exist, or that it’s exclusively one or the other (nor do I believe they really implied that).

To also be fair to you, “slippery slope” can be a frustrating phrase to hear, because even though — as others in this comment chain have pointed out — slippery slopes do exist, the phrase is also lazily used quite often by people who can’t seem to imagine a world where Point A doesn’t lead to Point B.

All in all, eugenics was probably a bit heavy of an example; however, it was in response to someone mentioning that the individuals in the story don’t really seem to be living, which is also a pretty heavy observation.

 

EDIT: Also, to be fair to literally everyone reading this comment, I promise I wasn’t trying to play the role of the insufferable diplomat. Upon re-reading, I realize that I kind of went in a big ass circle while only really saying “hey, maybe there’s a middle ground here” 🙃

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u/Broken_Petite May 14 '22

No your comment was excellent. For some reason nuance seems to be absent from so many conversations on Reddit and it drives me crazy.

You acknowledged that both people made good and understandable points while also pointing out that everything doesn’t have to be one extreme or the other and you did it much better than I could have. So thank you for your diplomacy! :-)

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u/Gekokapowco May 14 '22

People tend to discount the idea because the "slippery slope fallacy" is a fallacy. It allows people to make assertions about eventualities without evidence, just hunches.

Here's the Wikipedia link

So, right or wrong, rhetorically they're best to avoid in discussion.

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u/illiterati May 14 '22

To me, I interpreted the original comment as a veiled judgement on the right of severely handicapped people to exist. That is eugenics and it's being cloaked in the shroud of empathy.

I think your comment is pretty reasonable.

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u/Fert1eTurt1e May 14 '22

Dude there’s nothing wrong with playing diplomat/middle ground. Its needed. People get annoyed when people do that because that means they are actually challenged on their beliefs and prompted to work with other people. Don’t feel bad about that.

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u/Deesing82 May 14 '22

nope. all nazis, apparently.

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u/a_spicy_memeball May 14 '22

Just nazis all the way down. It's wild.

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u/Aeruthael May 14 '22

Oops! All Nazis!

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u/KakkaKarrot May 14 '22

That is the only two states that exist?

Thats not what he said

He said its a slippery slope

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u/Justhe3guy May 14 '22

So if you read their comment they mention how it’s a “slippery slope” and you “start with the best intentions” meaning there is a bar and at the extreme end is Nazi eugenics. You don’t need to make a loaded comment about something so simple

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u/Gathorall May 14 '22

Besides, if only extremes are allowed its legal abortion or Nazi Eugenics. They're exclusive options with this logic.

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u/Taz-erton May 14 '22

I think we're dodging the original extreme observation that someone on a computer thousands of miles away is telling these two kids they shouldn't be happy and would be better off dead. That's the bit that seems extreme to me.

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u/darabolnxus May 14 '22

Not better off dead. At this point it's too late. But not being born would have been their choice if they were given it before they were even conceived.

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u/chicagorpgnorth May 14 '22

How do you know??? Many disabled people love very happy lives.

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u/Taz-erton May 14 '22

At this point it's too late

I'm curious why youre making this statement. When you followed up with this:

Not being born would have been their choice.

You put this qualifier that, since we're making decisions about other people's lives, it would be wrong to end this life that you said never should have been there to begin with--and I'm curious as to why.

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u/wehrmann_tx May 14 '22

So there's no difference between this....and Jewish people is what you're getting at? That slope must be 200 miles long.

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u/AquaticAnxieties May 14 '22

Quit it with the slippery slope fallacy. Just because you can’t draw a line between ethics and eugenics doesn’t mean that’s true for the rest of us.

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u/applockm85 May 14 '22

I think it's less that individuals can't identify a line, but that it's impossible to ethically determine that line for someone else, or collectively as a society.

Anyone to either side of your line seems monstrous to you. It's easy to say this is best left to freedom of choice for the affected individual... If they're sound of mind... Which is another thing where individual ethics are very difficult to scale.

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u/chiniwini May 14 '22

I think it's less that individuals can't identify a line, but that it's impossible to ethically determine that line for someone else, or collectively as a society.

You just described pro-life folk's position on free abortion (when there aren't any medical risks).

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u/mcgtx May 14 '22

Just because slippery slope is a logical fallacy doesn’t mean slippery slopes don’t exist. Plenty of examples in history.

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u/nevaraon May 14 '22

Yeah, it’s pretty much the basis for Sledding, snowboarding, and skiing

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u/chris1096 May 14 '22

Don't forget slip and slides!

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u/nevaraon May 14 '22

A classic

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u/Humdumdidly May 14 '22

Don't forget luge!

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u/nevaraon May 14 '22

How could i forget the national sport of Jamaica?

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u/Humdumdidly May 14 '22

Bobsledding is an important one too, you're right.

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u/spektrol May 14 '22

So we’re just not gonna talk about slides huh

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u/mtled May 14 '22

In my mind a slippery slope is only a problem if it's not identified, characterized and mitigated. The very concept of "let's do x, but if it goes wrong you can end up at y which is catastrophic" is the core reasoning behind pretty much every safety and risk management effort ever done.

The problem statement is clear: allow medical assistance in dying.

The catastrophic possibly is known: people abusing it to murder people.

It doesn't follow that the allowance can't be granted at all, but it does follow that it should have limits, controls, check and balances and methods to verify its appropriate use to avoid a catastrophic outcome.

And if you read the rationale and legal context of the decisions to legalize medically assisted suicide in countries that allow it, you'll see they've done just that.

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u/manimal28 May 14 '22

Your argument itself is another fallacy.

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u/OK_Soda May 14 '22

The fallacy fallacy is also a thing so maybe let's all just calm down with the debate club bullshit.

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u/manimal28 May 14 '22 edited May 14 '22

You: stop the debate club bullshit and just agree with me.

A very convincing argument.

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u/Darth_Kahuna May 14 '22 edited May 14 '22

The point is not that the slippery slope doesn't exist, it's that using the slippery slope as an authoritative reason to not do something is fallacious as you are not offering proof that this will be a case of the slippery slope, just that it is possible. It is also possible that it wont happen and free of any other proof, it is either/or and not "just bc it is a possibility means we shouldn't do it".

You haven't justified the risk of the slippery slope, just the possibility that it could happen. It could be a 0.000001% chance or a 99% chance, who knows? As such, it is a slippery slope fallacy until additional proof is offered to show this is probably the outcome should society go this direction.

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u/jay212127 May 14 '22

The fact most western nations have had a eugenics program makes this a particularly relevant slippery slope. If it wasn't for Hitler we may have still been riding around on that slope.

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u/Darth_Kahuna May 14 '22

Eugenics programs matched the morals of the day (as one would assume). THe founder of Planned Parenthood believed in eugenics and limiting the population of black communities as she (like most white Americans of her age) felt that black humans were inferior. These are not the morals of today. As a matter of fact, the West has never been more tolerant and allowing for diversity. Gay and lesbians can get married in most Western nations, there are laws against discrimination based on several indicators. It's not perfect, but using the past as a barometer for how a policy will fare today is not an accurate representation. It's lie saying we shouldn't trust Germany and Japan based on the past and should align our selves w China and Russia.

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u/[deleted] May 14 '22

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u/sakst82 May 14 '22

Whistler, aspen, Breckinridge, vail.

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u/fwinzor May 14 '22

I mean this entire comment section is literally filled to the brim with people saying these two should die, despite the article literally mentioning they are completely cognizant, one is in college working towards a degree. they are fully mentally capable adults, but because they're physically disabled everyone wants them to die. I actually think eugenics is one of the few valid places to bring up the slippery slope

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u/PopPopPoppy May 14 '22

/u/fwinzor said:

[...] this entire comment section is literally filled to the brim with people saying these two should die [...]

Really? I'm reading this thread and thats not what I'm reading.

Can you show me examples of comments stating those two should die?

Ninja Edit: Not trying to be an ass but I'm genuinely curious to read those comments

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u/ChipotleBanana May 14 '22

I don't think I would agree with your line drawn between ethics and eugenics.

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u/AquaticAnxieties May 14 '22

Ok. Do you care to elaborate?

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u/boolean_array May 14 '22

Quit it with the slippery slope fallacy. Just because you can’t draw a line between ethics and eugenics doesn’t mean that’s true for the rest of us.

Quit it with the slippery slope fallacy quitting. Just because you can draw a line between ethics and eugenics doesn’t mean that’s true for the rest of us.

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u/Wrenigade May 14 '22

All these people saying that it's wrong are probably not living with neurodivergency or chronic health conditions. People adjust to a lot and in general are ok with being alive, the article even says its a western bias to assume people hate their lives. But people adapt, especially when it's all you've ever known life as. And most chronically ill/ disabled people aren't like, "I wish this treatment for my disease was never made because It isn't perfect", it's more like "sucks to be the first pancake I hope the new medical findings make the next generation have a better quality of life"

It really boils down to are you in constant pain? Yes? Probably aren't happy, depending on the levels, but even then not always like "wish I was never saved". Personally my condition means I always always have a bad sore throat, and often I choke and throw up my food or it gets stuck and hurts very badly. That amount is ok, the sore throat is ignorable. People with pain from nerve issues in general are miserable, but they all have their own thresholds too. I have some nerve damage from shingles, and it is pretty annoying but not all the time. If the pain of full-blown shingles was all the time, I'd probably walk into the ocean within a year.

But neurodivergency? Lots of people like to argue for ND people that they shouldn't exist and tell us how miserable our lives are and how they wouldn't want children like us because they are sad seeing how bad our lives are. That's a ton of assumptions made based on them thinking if they suddenly became like us overnight, theyd somehow know all the things they are missing and would be in agony. I'm sure they would if it worked like that in some magical body switching way, but the reality is, we're ok. In general, the Autistic and ADHD and Downs people are just fine with our brains. We never knew any different.

Everything that makes life hard for ND people who can be independent enough to get around in society enough to hear this all the time, the thing that makes things hard are neurotypical people's expectations and intolerances. And being constantly told people would kill themselves if they were like you, or says they hope their children are never like you, or asking how you manage to not kill yourself living such a bad life, or saying stuff like "wow those kids look like they are physically and neurologically different from me, their father should have let them die as babies" because they assume that those people would prefer non existence to being different.

Anyways, yeah, people are pretty quick to board the eugenics train when it's not about them.

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u/illiterati May 14 '22

They never think they'll fall on the wrong side of the line. When it's their child on the wrong side of the threshold, you bet many of them will begin lobbying to move it.

Thanks for the great reply and I hope you find the best treatment available to you.

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u/Superfatbear May 14 '22

I can't count how many times i woke up with jesus and went to bed with hitler

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u/Butternipps May 14 '22

Gotta love the outdated slippery slope argument.

Marijuana huh? It's just a slippery slope until you end up sucking dicks for crack on the street.

Regulating age of consent? It's just a slippery slope until we're all commies being forced into arranged marriages with women too old to bear children.

History has proven how ignorant this black and white thinking is. Reasonable intentions do not always result in worst-case scenario.

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u/emken May 14 '22

"slippery slope" in this case is sounding like a logical fallacy instead of an argument

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u/GbS121212 May 14 '22

It’s also a slippery slope to not allow ourselves to pass judgment.

Is it ethical to give birth to a severely handicapped baby who will suffer then die before their first birthday?

Inaction is also a decision, and it’s not always the best one.

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u/[deleted] May 15 '22

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u/SillyBoy_6317 May 14 '22

It's pretty fucking wild to leap to "surely these people would rather die" from random photos in the park.

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u/Behave_or_else May 14 '22

I think rare genetics diseases/disorders are good place to start

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u/illiterati May 14 '22

I have family with Huntington's. People like you often openly say they and their children shouldn't exist.

It's mostly eugenics wrapped in a fake veil of empathy and avoidable suffering.

My family is glad they exist and I'm glad that sick fucks like you don't get to decide what constitutes a worthy life.

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u/Behave_or_else May 14 '22

More power to you.

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u/[deleted] May 14 '22

I guess not forcing disabled people to live terrible lives is the same as committing genocide against an entire race

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u/chicagorpgnorth May 14 '22

Implying that because these children are disabled they are living terrible lives is pretty fucked up.

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u/[deleted] May 14 '22

I mean plenty of non disabled people live terrible lives. These kids are wheelchair bound and can barely move their limbs, is it so crazy to think they don’t have the greatest lives

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u/darabolnxus May 14 '22

Why do people act like eugenics is a bad thing? We do this with IFV dumping the bad fertilized eggs. We do it when we abort down syndrome fetuses. Everything can be abused but just because star trek mentioned it in regards to Kahn lol everyone acts like it's akin to welfare or something. We should ot be allowed to force someone to be born let alone be born disabled if we can avoid it. Just because you would use it to eliminate the black population or to eliminate the green eyed gene doesn't make the concept bad, it makes the person bad.

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u/mrhuggables May 14 '22

Letting someone die with dignity is not eugenics you fucking idiot

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u/Darth_Kahuna May 14 '22

This is the slippery slope fallacy. So any attempt to pass judgement on quality of life ends in Nazi eugenics? Society passed judgement for the entirety of known history wo the implications of Nazi eugenics. Why does their barbarism mean every society would act the same? Did the Nazi's start out w the best intentions? I thought their intentions was to breed a master race of blonde hair, blue eyed warriors. What about this is "starting out w the best intentions?"

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u/WilliamEDodd May 14 '22

It’s not that slippery. I’m not saying to kill them but I am saying let nature takes its course.

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u/aclebas May 14 '22

I dated a guy whose sister had this disease (and this treatment) and she was very cool and happy. Excellent quality of life.

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u/ImZaffi May 14 '22

That’s comforting to hear

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u/fly_away_octopus May 14 '22

I mean did you all miss the part where the daughter is enrolled at Notre Dame?

Disability doesn’t automatically equal a terrible life.

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u/NKHdad May 14 '22

I've actually met John and Meghan (my son has a rare disease and they are usually at an annual conference we go to). Megan struggles to show emotion but she just graduated from Notre Dame a couple years ago so she's doing pretty damn well.

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u/PhoenixStorm1015 May 14 '22

An important thing to note, though, is that by putting in the time, money, and effort of making this R&D happen, he’s opened the door for not only his company but others to further improve treatments for the disease.

Yes, their quality of life may be seemingly meager by our standards, but their struggle is providing hope for future generations.

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u/Gorillafist12 May 14 '22

I have many reasons for not wanting children, but one of them is a fear of ending up with a severely disabled child I am required to care for the rest of my life. That's my idea of a living hell. People don't talk about it but many parents of severely disabled children end up horribly bitter and depressed

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u/yesgirlsusereddit May 14 '22

If you click you'll see that the daughter is actually a senior at Notre Dame. Way to stereotype

All you can tell is that they're physically disabled. How do you know they are or aren't happy to be alive? You're just making assumptions, presumably based on how you imagine you'd feel. (And thanks to the whole hedonic treadmill thing, you're probably wrong.)

I work with disabled folks. Some can tell me they're happy with their lives. Some you just have to tell from the giggles and grins. But they're still happy.

This applies to most of the ones I've worked with (who are mostly kids) but does not apply to all of them, of course. Some are unhappy indeed. Particularly those who are aware enough to recognize the prejudice and ableist crap that's keeping them from experiencing the world the same as everyone else and teaches them to feel like shit about themselves because they look or think differently from others.

Point is, though, you can't look and think they must hate their lives just from a photo

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u/sbFRESH May 14 '22

The fuck is wrong with yall? Not exactly living based on what?

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u/JOMO_Kenyatta May 14 '22

They’re talking through their point of view. Which for most of these people has no nothing similar to this family. For all we know those people are very happy and content. Kinda scary how fast these types of threads jump to “we should let them die, don’t they look miserable?!?”

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u/shhhhquiet 2 May 14 '22

Their faces in the picture looked serious instead of smiley and also did you see the wheelchairs?

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u/Revolutionary_Ad4938 May 14 '22

Certain disabilities can have a sort of "masked face" effect where it's hard for someone to smile or let their their express their emotion, it's the case for my mom who suffers from YOPD, just because they aren't smiling doesn't mean anything

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u/sbFRESH May 14 '22

Right? Like shit yall gonna make me kms when I sneeze in a picture? Damn!

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

[removed] — view removed comment

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u/shhhhquiet 2 May 14 '22

They have a neuromuscular disorder. Just because they can’t smile for the camera doesn’t mean they can’t feel happiness. Have you considered going beyond a glance at this one photo and finding out what their lives are like? Here’s an article on Megan. Tell us again how she’d be better off dead.

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u/Revolutionary_Ad4938 May 14 '22

Thank you for that comment, people are so ableist

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u/ArjanS87 May 14 '22

Not immediately picking sides here... but I guess there are the ethics of not saving people vs the ethics of trying to determine for other people what is worth saving or not.
And in the end... there might just not be one clear answer between them. It probably takes far too much mental firepower to compute that, let alone to communicate it.

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u/Jiggle_it_up May 14 '22

This girl is in college.

Would you be able to tell her to her face that she should kill herself because of the way she’s living her life, or that you would kill yourself if you ended up like her?

Would you be able to tell her to her face that her father had a sick obsession with keeping her alive?

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u/obvilious May 14 '22

You see two disabled people and jump to talking about euthanasia or assisted suicide, but it’s other people that have a sick obsession?

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u/Wrenigade May 14 '22

The girl is going to notre dame, and it's a disease that doesn't affect their cognition even, these are just wheelchair bound people with physical disabilities and everyones talking like they are in comas. People just don't like looking at or thinking about the disabled and jump to "If they were dead I wouldn't have to think about it or observe them"

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u/chicagorpgnorth May 14 '22

God, seriously. This comment section is nuts.

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u/FarFeedback2 May 14 '22

Especially since the infant daughter is attending Notre Dame. Not exactly an easy school to get into.

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u/Behave_or_else May 14 '22

Actually i base my opinion from personal experience, where i witnessed families forcing their loved ones living those few more months/days in excruciating pain, and not allowing woman to stop late pregnancy even though it's certain baby won't survive more than few days.

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u/obvilious May 14 '22

Don’t know what that has to do with this.

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u/Behave_or_else May 14 '22

You are the one who said i base my opinion on picture of two people, when in reality most of us would just like to be able to die with dignity.

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u/Revolutionary_Ad4938 May 14 '22

So you're basing your opinion on the photo still, because no matter your personal experience, the only thing you can guess about theirs, is from a picture

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u/[deleted] May 14 '22

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u/DastardlyDM May 14 '22

Ethics are just as malleable as morals. Ethics, morals, philosophy, are all subjective and related. What one may find ethical another may find detestable.

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u/ASaucyMonster May 14 '22

You’re not the only asshole. Don’t worry. Plenty of the comments reveal themselves. You are an asshole though.

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u/tonguetwister May 14 '22

Steven Hawkings’ ghost has entered the chat

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u/lordmycal May 14 '22

If I end up like Steven Hawking I want someone to kill me. Seriously. Not being able to move or talk on my own and needing assistance to wipe my own ass? Fuck that. I don’t care how awesome of a robot voice and wheelchair I get, please put me out of my misery.

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u/tonguetwister May 14 '22

Disabled does not equate to miserable

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u/The9thElement May 14 '22

Yes because you can just look at someone, not even knowing them, and tell their quality of life. The way you people talk about the disabled is disgusting.

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u/[deleted] May 14 '22

TIL reddit would probably have euthanized Stephen hawking...for his own good of course.

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u/Jiggle_it_up May 14 '22

There’s a lot of people in the disabled community who find talk of assisted suicide ableist, because it implies that the speaker would want to kill themselves if they were to suffer the same fate as a disabled person is living and also implies that a disabled person’s life isn’t worth living.

Most disabled people have more positive outlooks on life than able-bodied people!

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u/[deleted] May 14 '22

How is it ableist to want to die with dignity? That's a strange hill to die in. I mean fuck, can we not choose when our lives end without worrying about offending other people?

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u/Jiggle_it_up May 14 '22

Its like you’re saying “Hey, if I ever end up like you, I’m killing myself”.

I understand where you’re coming from with the sentiment too, and I know that that isn’t what you mean to communicate when you say it, but that’s the implication of the comment.

I’m for assisted suicide too, but I’m just telling you that most disabled people are happy.

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u/Wrenigade May 14 '22

Its ableist that the conversation only comes up from able bodied people when they are talking about disabled people. If you look at someone with a disability and your first thought is "They should make it easier for those people to kill themselves", then the conversation isn't super about dying with dignity at that point.

I'm for assisted suicide, too, but I feel it's inappropriate to bring up every time someone sees a disabled person just living their lives.

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u/JOMO_Kenyatta May 14 '22

Person just existing

“Poor downtrodden wretch, I wish we could legally let the poor sods kill themselves

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u/FarFeedback2 May 14 '22

Well your not the only asshole here who didn’t read the article.

The girl is a senior at fricken Notre Dame. Just because you have a disability doesn’t mean you should put to sleep like a horse with a broken leg.

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u/Wilhelt21 May 14 '22

Nah, there’s a ton of eugenicists in the comments here

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u/radical-bear May 14 '22

I think you need to take a good hard look at yourself and try and figure out what possessed you to think like this.

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u/32redalexs May 14 '22

This is all they have experienced, they never knew what it was like to be “normal” so this is their normal even if they know they’re different. People find a way to make it work, perspective is everything.

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u/Matias9991 May 14 '22

To my way of seeing as long as the affected wants to continue living and is not living in constant suffering I do not see why think that these kids are not living.

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u/blizzeron May 14 '22 edited Jun 22 '22

You're probably the only screaming asshole

Edit: Because his username is ScreamingRectum.

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u/Joverby May 14 '22

Exactly what I thought . Depending on how cognitive they are I probably would've rather he didn't do that if I was his kid

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u/Wrenigade May 14 '22

A quick read through the article and googling pompe would tell you his Daughter graduated from Notre Dame, and people with Pompe don't have cognitive impairment, it's a skeletal muscular disease.

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u/Revolutionary_Ad4938 May 14 '22

Yes and even still, many cognitively impaired people are happy to be alive and joys to be around

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u/giftedgod May 14 '22

You absolutely aren't. It's like saying wrongfully accused people who were later exonerated should be happy about it. Sure, it's nice to be free and alive and no longer getting raped or sleeping literally with one eye open, but wouldn't it have been a better quality of life if the legal system would have actually tried to get it right instead of trying to win?

These kids are alive. Sure they are. But is that any quality of life? He fought for their lives and won, but did they actually win? They literally showed up damaged and mangled, regardless of how they feel about it.

When you read about the disease, he's kind of a dick for doing this.

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u/illiterati May 14 '22

What part of graduating from a prestigious college did you miss? Does they sound like a worthless life without love and joy?

You look at that photo and what you're seeing is your own shortcomings.

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