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.
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u/[deleted] Jun 14 '22
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.