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6:28am August 21, 2014

So maybe this is me being a bad disability person but

into-the-weeds:

nicocoer:

I don’t have any problems with the ALS challenge. But neither does my (step) Abuela, who has ALS herself. sure it’s a bit wacky, but people are donating money. 

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I want to boost this—a lot of the criticisms that I’ve seen are coming from heuristics that the disability community has developed for really good reasons, but which don’t quite map here. Which is really cool! 

Reblogging for tags:

Tags: yeah this is why as much as it makes me really happy to see disability rights people talking about people with CF I get really worried about that day when they’ll mess it up some things actually kill people I care a lot about acceptance and accommodationsbut I also care a lot about not dying

Exactly.  I don’t have anything that results in certain death (except some stuff that absolutely would’ve killed me untreated), but with precarious health that could result in my death at any time, I get the sense there’s this whole portion of the disability community that does not have to deal with this and does not have to think about it and does not want to think about it when they think up their ethics.  In my case, gastroparesis can kill, adrenal insufficiency can kill, bronchiectasis can kill, myasthenia gravis can kill, and the whole combination of those things is like a disaster waiting to happen (I say as I’m recovering from aspiration pneumonia for what seems like the billionth time).  And then people wonder why I get behind campaigns to cure these things, or awareness campaigns, and the like.

Notes:
  1. black-widow-is-my-patronus reblogged this from ladystoneshield
  2. moregeousbdffs reblogged this from into-the-weeds
  3. what-larks-pip reblogged this from into-the-weeds and added:
    This. So much of all of this. ALS is a fucking asshole disease where you wake up every morning and wonder what might be...
  4. demicullens reblogged this from autisticstannis
  5. autisticstannis reblogged this from humainsvolants
  6. humainsvolants reblogged this from withasmoothroundstone
  7. jeriorlizisthinking reblogged this from j-asexyrex
  8. wholockedanglophile reblogged this from withasmoothroundstone and added:
    I didn’t even know that ALS existed before the ice bucket challenge. I’m not ignorant; I’d just never heard of it. In...
  9. j-asexyrex reblogged this from withasmoothroundstone
  10. withasmoothroundstone reblogged this from dendriforming and added:
    Reblogging for tags: yeah this is why as much as it makes me really happy to see disability rights people talking about...
  11. transponderer reblogged this from into-the-weeds and added:
    I haven’t seen the other criticisms of the ice challenge, but my primary complaint is that, well, I live in California,...
  12. everybody-spoops reblogged this from into-the-weeds
  13. dendriforming reblogged this from into-the-weeds
  14. errantlight reblogged this from into-the-weeds
  15. rzbbit reblogged this from into-the-weeds
  16. into-the-weeds reblogged this from nicocoer and added:
    I want to boost this–a lot of the criticisms that I’ve seen are coming from heuristics that the disability community has...
  17. ladystoneshield reblogged this from namelessthingsdismantle
  18. namelessthingsdismantle reblogged this from withasmoothroundstone