I would just like to point out that Mihai Sucan, a wonderful developer that worked on the Mozilla Developer Tools, passed away in April of this year due to the skin cancer this disease often leads to. I had the privilege of knowing him.
I am very glad to see that a great medical research center such as Stanford is doing work to heal this disease. If you want to make a donation this year, please consider them. Mihai also wrote about donating in his last blog post.
Good thing we didn't kill him in the womb or in the cradle then, as others on this page are advocating. His life was sadly short, but we are better for having had him.
To maybe phrase the other comment's concern more formally, the argument of whether or not to abort is filled with case-by-case circumstances, and saying that humanity is better for the contributions of a person without taking into account the extent of the person's or their parent's suffering is far too reductive to stand as an argument.
Isn't this what every major political figure in America does, constantly? I don't know where you live but here I feel like not a single school shooting, natural disaster, high-profile murder, outbreak of sickness, etc. goes by without major figures from one or both political parties trying to use it to somehow advance their agenda.
It's a little scummy, but yours seems like a bit of an overreaction for a (sadly) extremely common practice.
I get that it didn't come across well, but I wasn't saying "whatever Donald Trump does in a campaign speech is good enough for me," I was saying, "this seems to be a defining characteristic of our political discourse, I get finding it distasteful all-caps yelling about it seems like an over-reaction." I stand by that. Down-vote all you want.
Sick Children's Hospital in Toronto is a global leader in research and the center for all of Canada's EB patients. The EB program is the only one where ALL members must rotate (i.e - take time away from EB patients). To see the toll on all involved is devastating; partly because the realities for EB outcomes are still stark.
Please, let's not turn this thread into a big slanging match.
> "“One child came in costume as a mummy, covered in bandages. During the evening, some of the blood from his wounds began to seep through the gauze, and those who didn’t know this child had EB were remarking about how realistic the bloodstains were. It’s impossible for me to imagine what it’s like to be the parent of that child.”
Anyone who tries to eliminate suffering by killing the "sufferers" is establishing a horrific trend. It is not for us to decide who has a life worth living and who doesn't, and we certainly wouldn't want someone else making that decision for us.
Abortion is already both legal and morally acceptable in many places, especially in cases the fetus has or is known to develop a debilitating untreatable disease. What if a test were to be developed to detect this condition before the second trimester or whatever the legal boundary is?
I don't think moral realism / moral universalism would claim that whether something is morally ok depends on where (I.e. in what community) it is. Instead, I think "considered morally acceptable" might be an alternate phrasing which doesn't say (much of) anything about meta-ethics.
I understand the concept of a slippery slope, but let's acknowledge the fact that parents routinely make every single medical decision for their babies, because somebody has to, and the babies aren't capable.
In the article, one of the featured patients asked his parents to kill him to end is lifelong torture. You have the privilege of not living with burning skin and relying on hours of medical care every day.
What I'm suggesting is a balance between natural rights and consequentialism. The current situation where we only care about natural rights is also horrific, so there is no ground for a slippery slope argument.
Adults and even children can make choices about their treatment or if they prefer to die (do you think the children in this article should have been given this choice incidentally?) But for babies we should be willing to make that choice for them in extreme circumstances.
Every organism wants to live. Most majority of people don't want to die even though suffering from terrible disease like this. Even seconds matter sometimes. No one has any privilege or right to decide on who deserve to live or die.
I'd agree with you if we were living in the Middle Ages. However, since we're approaching the 3rd decade of the 21st century, I really wish more people would take a "how do we solve this problem" attitude. It's really only a matter of money, talent, and resources to solve most problems.
Well, that's a trivial proof. Kill everybody and there will be no suffering. Then you invoke what does intrinsically matter to recognize that this is an unacceptable solution, because you've actually destroyed everything that matters.
What does matter is reliable, flexible decision-making capabilities, and killing someone is just about the worst way to achieve that (barring that the person you kill isn't doing more damage than good in this regard.) Suffering is bad because it causes people to make bad decisions.
And that isn't something you can easily argue is true for the situation I was responding to.
The argument in your first paragraph shows that suffering is not the only thing that matters; it doesn't prove it isn't a thing that matters (which is what you claimed before).
I don't think it's tenable to say that suffering is bad only "because it causes people to make bad decisions", unless you are comfortable saying that inflicting pain on infants is morally neutral. (I don't think a very small baby can rightly be said to be "making decisions", good or bad.)
I said it doesn't matter intrinsically. It matters when you consider its effects on decision-making.
>unless you are comfortable saying that inflicting pain on infants is morally neutral.
Why not make your argument about chickens or pigs? I don't care if a chicken suffers before I eat it: it's dead. It was bred to die. That's not much of a moral quandary for me, to be honest.
Baby humans have a lot of potential, and we need them to make good decisions as adults. That doesn't happen when you don't care about children's pain. But it definitely also doesn't happen if you kill them.
By your logic, I could breed slaves to suffer and die for my benefit, with no moral quandary, as long as I never let them make any decisions. This was in fact USA law for decades.
That is not my logic, you've completely missed my point. The adult human brain is the most powerful decision-making tool known to have ever existed anywhere in the entire universe. That being the trait that makes humans valuable, and slavery undermining that makes it somewhat incompatible with my morality.
Chickens do not have that potential to be valuable decision-makers. That is the only reason it is acceptable to breed them for death.
You could say the same about any morality, though I don't see why you think it's arbitrary or anthropocentric. For one, I am talking about the properties of information, which isn't arbitrary. And you could certainly build a machine, find another animal, or locate an ecosystem that has more value than humans.
Especially when you've got a world of absurd religious philosophies to compare it to.
So you're arguing that if inflicting pain produces better decisions (as it occasionally does), it is not just morally acceptable, but an actual positive force for good?
No, if inflicting pain produces better, more circumstantially adaptable decision-making capabilities, then I would agree.
And when it does, it clearly is good. That's why we evolved pain receptors: because it enables better decision-making capabilities. People who can't feel pain suffer plenty for it, and they live in real danger.
The whole entirety of the universe simply doesn't possess any form of meaning whatsoever if people do not experience pain or agony? Is that what you're trying to claim?
Meaning is not a side-effect of suffering. It's a side effect of correlations between subsets of reality, like those necessary to drive perception and rationality.
This statement means that the 'mattering' (meaning) of anything else is contingent upon the existence of meaningful suffering. So if there were no suffering, nothing else could matter.
That would only follow if the quoted statement was also true if there was no suffering.
If there exist some X, and it was true that either some X Y, or nothing Y, that would not imply that if it were the case that there are no X, that nothing Y.
If it is true that (H & J) -> K, and it is true that H, then it is true that J -> K.
Let H be "there is some suffering", let J be "something means something/matters", and K be "some suffering matters/ means something".
J -> K is equivalent to K or not J.
If one believes that "if there is some suffering, and there is something that matters, then some suffering matters", and one also believes that there is some suffering, one could then conclude that "either some suffering means something, or nothing does". This does not mean that one could conclude that "if there WERE no suffering, nothing would mean anything". Rather, one would only conclude that "if there IS no suffering, nothing means anything", but that is only because one already believes that there is some suffering. One could, under the beliefs above, reach the conclusion that "if there is no suffering, <insert anything here>" by the principle of explosion.
Well, yes, I was assuming that the elimination of suffering was a realizable goal, and if we assume it is a good goal, then accepting "there is suffering or nothing matters" implies that it is consequentially a goal to make nothing matter.
But like I said, it is the exchange of information that gives things meaning (that's what minds do,) and the only way to actually make nothing matter is to destroy all information-processing systems.
No. I'm saying that suffering appears to be an integral part of the human experience, so if anything we do matters, then suffering (and joy, and all the rest) must also matter.
You can read his blog here: http://mihai.sucan.ro/mihai/blog
His twin brother is still fighting.
I am very glad to see that a great medical research center such as Stanford is doing work to heal this disease. If you want to make a donation this year, please consider them. Mihai also wrote about donating in his last blog post.