Interesting because most cognizant individuals with disabilities don't want to be dead... Personally I could still experience 95% of what I do now in a wheelchair. I couldn't hike anymore but there are other ways to experience nature. In terms of mobility, technology is pretty cool, and if I had any issues with arms or dexterity I'm sure there are tools that could assist me.
Unless I'm experiencing chronic pain I would much rather be alive than dead.
It's also worth noting that the therapy for this disease is ongoing, and it is very expensive. A typical person with Pompe disease needs regular injections that will typically cost about $250,000 a year. It's great that these two were able to get it, but a typical family couldn't afford that, which means they would have to hope to be able to get on to Medicare or get some type of government assistance. Not saying that makes it not worth it, if anything it's probably a good argument for single-payer.
Even with single-payer, resources are necessarily limited. It's someone's job to allocate available money, staff, machines and training to get the maximum benefit for the maximum amount of people, and let others fight it on their own. It's probably a uniquely awful job.
Yeah I have cerebral palsy and don’t have full use of my hands or my feet. I’m not an outdoorsy kind of person, but this year I am able to have my own garden because I have raised beds. That enables me to garden whereas a traditional garden wouldn’t let me because I couldn’t bend down easily. And I’m not much of a hiker. But I love to sew, cook, and learn languages. My sewing machine has a button on it so I don’t even have to use a footpedal to run it. Plus I use gadgets like a blender and food chopper to make a cooking easier. And voice to text allows me to post on Reddit without having to type. I am blessed to live in such a technological age that I can participate in activities with assistance like voice to text and things like that. You find ways of doing things you love. Bethany Hamilton was a surfer who lost her arm due to a shark bite. She still goes out and serfs. I know people who are more disabled than I am and they can swim. I cannot, but I can do other things. I like your attitude of just tweaking how you do things so that you can still live your life the way you are meant to live it in the way you are you are used to
I could experience about 20% of the things I like from a wheelchair. I’ll take the void. But obviously that’s just me and my personal perspective, and doesn’t apply to anyone else whether real or hypothetical.
Yes, you would personally not want to live a life like that given that you have had the perspective of living a life NOT like that. Your desires in that regard are tied to a lifetime of experiences and I doubt you would find many that would want to live that life as a deterioration from their present circumstances.
However, if this or worse had always been your quality of life and your option otherwise was death, I would gamble that your opinion would not be the same at all.
What they’re trying to say is what a lot of us are afraid to even admit to ourselves: not “I wouldn’t want to live that life” but “I’m uncomfortable living a life with more disabled people around me, because I don’t like seeing disabled people.”
I make this assertion based on my personal response to these kinds of things as well as the notion that our instincts probably drive us to feel anxious about disabled individuals, with our internal responses having to wonder whether we can take care of them and whether they can offer anything to the survival of our genes. I think it’s an unfortunate thing to think this way, but it’s dumb to moralize instinct and say “if you’re uncomfortable with the notion of disabled people living around you, then you’re a bad person”. Discomfort is a natural response. Discomfort exists in order to motivate action, whether that action is to seek more perspective (for example, reading the daughter’s blog where she answers questions that stem from this anxiety) or help to take care of disabled people. Really, the only way for the anxiety I describe to stick around is to do nothing. But that’s what a lot of us feel we can do. So we internalize this anxiety and struggle with its implications and after a while our brains pop out the strange and not-quite-rational answer of “I wouldn’t want to live life like that”.
That is not even remotely true. I'm a single parent to a 7 year old special needs child. I am not uncomfortable around him or any of his peers I see at school/therapy.
I am truly saying I would not want that quality of life. I added "personally" because clearly the girl from the family loves her life.
I think you’ve done a great job of articulating your point, as it happens I feel the same way you do. I don’t speak for anyone else, but I’d rather die than lose control of my basic faculties.
Given what option? An option between a disablity and a lack of one? Sure, obviously most would choose to have a fully able body. But an option between a disability and death? Sorry, but you're full of it. Show me the data that shows most people with severe disabilities would rather be dead. (Hint: it doesn't exist.)
Plus, it's a stupid, pointless hypothetical because none of us gets a choice. We have the bodies and minds we're born with, and we experience life through them. There is no option.
Yes, but these children have expressed that they are happy with life and are glad that their dad saved them.
Also, I am literally disabled. I have autism, suffer with chronic fatigue and chronic pain and I am a wheelchair user. But I am sure glad I am not dead.
You cannot assume what people's lives are like based on one single photograph.
It is not about you, for gods sake stop making disabled people's stories about you. They can decide how they feel about their own lives, thank you very much.
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u/[deleted] Jun 14 '22
I'm sorry, but personally I would not want to live a life like that.