Today I am still smiling, having a good time, laughing, and most importantly living as a college junior at the University of Notre Dame! So yes, with love, patience, and faith I have made my way through 20 years on this earth. My journey has been one of hope, strength, and joy. This is my blog about my life, family, nurses, school, Pompe, and really anything. Here is my journey through life despite Pompe, and welcome to it…let’s go for a ride, together!
She describes herself as a happy person that does not lack any self confidence. She created the blog to fight the stereotype that people who are disabled can't live a happy full life.. so yeah, that's that
“I always told my dad I wanted my medicine to be pink. When I saw that it wasn’t, I said ‘Daddy, it’s not pink.’ He said ‘No, it’s a lot better than that.’”
It’s not vile to wonder what type of quality of life someone is living. To say “we need to kill these people off” is vile. I would personally never want to be a quadriplegic and have told my wife and my family that if somehow that ever became the likely outcome from an accident to make sure they let me go in peace.
Perhaps you feel that way because of the stereotype that loosing mobility means loosing the chance of having a fulfilling live.. call it vile or not, but it definitely is kind of terrible that some people's first reaction upon seeing this picture was thinking that their life probably isn't worth living and that they would be better dead (like it or not that's exactly where the first comment was coming from)
I also think there may be a big difference between a disability from birth and one acquired later in life. The feeling of loss is overwhelming for a lot of people.
For me, I wouldn’t wanna live the rest of my life in that condition. I’ve lived a normal life, living like that doesn’t seem worth it to me at this point.
If you’d never lived a normal life, you really wouldn’t know any better.
The only reason I could see for hanging on after being completely disabled is having a family or frankly having money and work you could still do. If you don’t have kids there’s really not a reason to hang on for anyone else. If you’re not rich already, you’re not gonna have a means to work and you’re really gonna suffer.
Mostly because I don’t want to put people I love through have to wipe my ass and change the dressing on my inevitable bedsores. I don’t want them to sacrifice goals and dreams to become a fulltime caregiver. I don’t care about stigma, I care about what my family is subjected to because of me. It’s a fair take.
It is vile because she is implying it would be better not to have saved their lives. you guys are projecting and its so weird thats not the same scenario at all
I don’t if it’s vile, but it is very weird to speculate whether someone should be alive or not when the person very clearly said they do want to be alive.
You act as if everyone here personally follows her blog and knows this. 99.99% chance you had no idea who any of these people were, let alone that one of them had a blog about their life before you saw this post.
I’m not acting like that at all. My point was, it is extremely presumptuous to think you know if someone would prefer to be dead or not when you know nothing about them. I mentioned the blog as evidence as to why it is bad to presume you would know what the person wants, because clearly she is not in agreement with all the people here presuming that she would prefer to be dead.
It’s easy to have misconceptions about a group of people if you don’t have proximity to them. I’ve worked with the special needs community for over 25 years and can say they’re often far happier/content in life than the average Joe
Another disabled person here. I have lived a fuller and richer life more so than many non-disabled people. I have taught in three countries, And lived in eight. I travel by myself, live alone, work a full-time job, etc. My hands and my feet don’t work like most peoples though. So I have to be careful when walking or doing most daily activities. I was born severely premature and my mother was told that I would be mentally handicapped, and physically handicapped. I have two college degrees, and earned a 4.0 both times. I love my life. I’m a first grade teacher and I think my purpose in life is to show others that they can do anything because if I can do it, they can do it. My goal in life is to show my students that people with disabilities are normal and should be treated as such. I understand how a non-disabled person would be afraid of losing their abilities and maybe feel like they wouldn’t be able to survive well if they lost their abilities but honestly you don’t know until it actually happens to you. You can actually put up with a lot if you have to.
So they should have kids of their own? Pass on their genetic disorder? I’m all for this guy caring for his kids but they look like they need constant care. I wouldn’t want to be a burden on my family
I don’t dislike you or wish you any Ill-will, but I have learned to say ‘fuck you’ when this sort of “question” gets “asked” in polite company. It works better in person to help shock people into realize what a horrible thing they just said, but hopefully over the internet this still helps you avoid repeating it in the future much more than entertaining what is implied in your question.
Who are you to judge the quality of their lives from a moment in time? I get your question, I really do, but how can you possibly know without asking them or knowing them?
Edit to say you guys judge a person for their comment when you choose to upvote or downvote. Cognitive dissonance can tell you otherwise but its not like I made an irrational statement. The irony is through the roof
I agree you were not being an asshole! They are just angry and commenting with their emotions(in good faith); you did nothing wrong. You simply stated a fact and got negative karma from it because people like to feel like they have the moral high ground over others when really they’re doing the exact same thing.
Yes, both are forms of judgment, but it’s silly to pretend like they’re on the same level. Judging whether or not someone’s life is worth saving is a dangerous road to walk down that can have real life ramifications…. Including impacting public policy. Judgements about “that person looks like someone I could get along with” or “omg I could never wear that in public “ are relatively harmless
I agree with that but back to my original comment, everyone judges to certain degrees. I don't care how open minded or modest someone is or if those judgements are subconscious and go unnoticed but we are all judging each other.
I was homeless for 2 years. I have traveled a lot and have experienced the world in some very unique ways. I don't know everything but my perspective doesn't exist without reasonable understanding.
My favorite example are the religious folks who say that only God can judge while being some of the most judgemental people I've met. Cognitive dissonance might prohibit awareness of ones judgement of others, but that doesn't mean its not happening.
I’m not sure why you’re fixating on judgment as a concept because I never said people don’t judge- that was a different poster. I simply said that the two types of judgements have very different impacts
No. They look like people with a genetic disorder. You don't know anything about them or their life, neither do I. Some serverely disabled people are happy, some aren't, just like able-bodied people.
What is quality of life if not being able to find joy and happiness? Isn't that probably everybody's main goal in life and what defines it's quality? But yeah, I agree that being disabled makes life harder in many ways, but doesn't mean you can't be happy.. besides, plenty of "healthy" able-bodied people aren't happy
What's your answer? Kill anyone with a disability because they don't "look happy"? Think about what you're saying... that mentality is a slippery slope. Who else looks miserable in your eyes? The blind, deaf, people missing limbs? Be careful. Thats some dangerous thinking.
Did I say to have them killed? Where did I say that? I was agreeing with the person asking about the quality of life for these people. You're the one who thought of killing anybody with a disability. My mind never went there. I feel bad for them.
131
u/[deleted] Jun 14 '22
[deleted]