If you were born with a disease that made you blind, complete loss of hearing by 20, have seizures, require a feeding tube, colostomy bag, wheelchair and have sleep apnea. Would you want to live?
Part 2: if you were the parent, would you feel it would be ethical to keep them alive?
A big Yes.
A good friend of mine has a disease that gradually makes all his muscles useless, more and more over time. Currently he can only move his head a little. Arms and legs no more. He is in a wheelchair, and he also needs assistance there with every motion. Talking has already started to get a little bad. There is no cure. He loves and enjoys life.
The blind and deaf combo sounds hard though, not sure what's left to enjoy.
I don't trust the able to decide what level of disability makes one's life not worth living.
I would be trapped in my already overwhelming flood of ADHD brain activity. It would not be living for me, just suffering.
If it was my child then the ethical thing is respecting their choice on whether they want to live at whatever point in their life.
If it was possible to diagnose before birth then abortion would be ethical.
Nope.
No thanks
If this fucking world would take care of disabled people instead of fucking throwing them on the street and letting them die slowly or be slaves in the industrial prison complex then yeah. There would be great things if things was made to be accessible which is completely something we could do but we don't because eugenics.
Fuck no! And I'd do my best to put that child to "rest"... or, would've said: "No." to life sustaining treatments early on.
MedicPic BabySometimesSaver amite
The baby would be saved from a life of endless suffering. That's the ethical choice in my book.
So yes, BabySaver.
Well, if it were mine and under life altering circumstances... Yes.
No.
And no, it would be extremely unethical to put a child on this world that would suffer that much. Have some compassion, mum!
I would be a completely different person, so how should I know?
"Do you want to live?" is a question where an answer is independent of external* factors and it comes from within.
Still I would propably want to live.
*but it can get complicated
I would fly to some European country for euthanasia. My mom would keep me alive against my will just to be "sentimonious awesome in."
20 is an adult and it's not the parents' choice, if the kid is competent to choose, and none of this sounds like he isn't. My personal end of life instructions will say no feeding tube, I would rather go ahead and starve if that sick, but I am a lot older than 20.
I will say that this is close to my idea of a baseline of existence and why I feel like most of us should feel like we are doing pretty well, physically.
how would anyone answer this question?
if it's my life I will adapt to it,
but it is not mine, and the idea of adapting to it is unfathomable... for now.
what more could you expect?
I have a bunch of disabilities that are nowhere near the scale that you describe, but often I feel so demoralised by how hard it is to exist as a disabled person that I want to die. But my resistance is galvanised by knowing that the people and the systems that would most benefit from my death are the ones who are making things harder for me, and people like me. Is it sustainable to continue living out of spite? Probably not, but it's not just spite that keeps me going, but solidarity with other disabled people, and people who are marginalised by society in other ways too.
It sucks to be disabled. Even if society were radically different and far kinder than it currently is, it would still suck to be disabled. However, so much of my suffering is based in the world rather than my disability. Recently, for example, I had a meltdown because I was on holiday and the venue had described itself as being wheelchair accessible. It was not. When I complained that they shouldn't list this as being the case if they're not, this caused great offence. We found somewhere else to stay that night, and I later broke down at how fucked up it is that there's more social stigma around being thought of as ableist than actually being ableist. Travelling with mobility problems is hard, but it would be way easier if there were less "compassion theatre", where people want to appear accepting but are so deeply uncomfortable with thinking about disability and disabled people that they don't meaningfully engage with accessibility issues.
My theory is that disability makes people feel uncomfortable because it reminds them of their own mortality. Being able-bodied is a temporary state, and that scares people. It means that a person like me merely existing at all is an act of rebellion and activism. I deeply wish that this weren't so, because it's so much work on top of the additional effort it takes to exist with a broken body, but besides dying, I can't really opt out of that work — and if I did opt out in that manner, the work would still need to be done by the people who are just as tired and burnt out as I am. If being alive is an act of resistance, then I reckon that if I hold out as long as I can, I might be able to make the journey a little easier for those around me, or those who come after me. If I had to answer your question with respect to my current circumstances, I'd say that no, I don't want to live. But I do anyway, out of defiance.
I reckon the same logic would resonate with me even if my needs were more significant. Hell, part of what led me to develop the views I currently hold is by being in community with disabled people whose lived experience is not far from what you describe. I have a lot more in common with them than it might seem at first glance, and that understanding gave me a lot of strength. It may well be a foolish hope, but if enough people push for change, then maybe we can build a world where fewer disabled people feel that death is preferable to life.
Here's an image that captures my sentiment effectively, and has literally saved my life before: "I'm fucking fed up and tired and I want to die but living is the most punk shit I've ever fucking done"
I think your point about people not wanting to be reminded of their mortality is sadly true. There are a lot of people that would prefer to be ignorant to the disabled, financially challenged, orphaned, etc. because they are difficult and extremely stressful situations to think about. Part of me understands why someone would want to keep their happiness by avoiding those people but at the same time I think people in better situations have a social obligation to help the less fortunate. It's a rough world, real r/OrphanCrushingMachine stuff.
No. Loss of vision alone would be enough.
I wouldn't be happy about it one little bit, but I think I'd still want to live as best I could.
If my child was going through that and I genuinely believed them that they wanted to die, I don't know. I'd like to think I'd honour the wish, but it took me like 2 weeks of knowing something was up before getting my cat put down so...
"Fellas, if you were born with Mechamaru Poop Body and could enjoy nothing, would you still want to exist?"
For context, this account on IG is a mother to one. I personally think it would be extremely difficult to believe any amount of care would give this child a decent quality of life.
Blind and lack of hearing would be hard. If I knew it was coming and could practice other communication, I'd try it out for a few years at least
I think without sight and hearing, it would be difficult even just to know if you're dreaming or not
I have none of that, and still don't want to live.
Modern youths don't want anything except for computer games and labooboos or whatever. In my times we... (snoring)
Fair, understandable, relatable.
exactly my thoughts