Originally posted by niallel
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I normally try not to piss on people's parades (or hypothetical fantasy pride parades), and try to withhold what I consider rational thought from the usual overly optimistic cure forums. Some people need that glimmer of hope to keep breathing... for me it was easier to accept the fact that this is life now and it's never, ever going to change and move on. But perhaps the truth lies somewhere in between. In order to move on with my life I've had to completely reject the possibility of a cure, and while I think the scientific evidence and medical precedents are on my side, those who have had to completely believe in an imminent cure are not necessarily more unconsciously biased toward the possibility of a cure than I am against one.
Still I think the main criticism of my post (before I started getting all salty and ornery) is fair.
It's not as if people marching for us or waiving cripple flags or voting for constitutional amendments that say "Spinal cord injuries are officially the devil's work" is going to do anyone any good. It's a (thus far at least) insurmountable technical challenge, not an issue of social injustice.
There are no pride parades for teleportation or marches on washington for the immediate and complete funding of a time travel machine. Yet asking for these as yet impossible technologies is probably closer in nature to asking for an SCI cure than legalizing pot or letting gays bone each other without breaking the law.
If we look at a more comparable cause, Breast Cancer has been very big and raised tons of money (way more than SCI could ever feasibly raise) and have been in full swing for decades, and the result has been maybe a 10 or 15% decrease in overall mortality (and who's to say that wouldn't have happened anyway with improving imaging technology and increased screening). There's certainly nothing approaching a "cure" for all breast cancer on the horizon and pretty much all of us know someone who's had breast cancer.
But let me reign myself in before I go all crotchety-old-man on you fine folks again.
If you want to do something for a cure, great. Go get a PhD in neurobiology and do the research yourself... I'd certainly never fault anyone for pursuing science, regardless of whether or not you can find a cure, you're likely to stumble across something that makes someone's life better. Hell, you don't have to go that far, researchers are always looking for lab assistants, go volunteer your time doing the work, not trying to convince others to raise the money.
If you want to go out and organize to make lives better for SCIers everywhere, you should probably start by pushing developing countries towards starting to build accessible infrastructure or mass producing high end cushions to provide to global SCIers who's countries can't afford what we would consider proper SCI equipment. Organize for a single payer system in the US and I'll be right behind you, it will free up trillions in savings, some of which will almost necessarily filter back into basic science research furthering the cause of a cure. Write your senator to convince them that a hard cutoff for loss of Social Security, Medicare and Medicaid benefits is counterproductive and there should be a graduated system of benefits reduction as income increases, more disabled people will go back to work if they know their benefits won't be suddenly and precipitously cut off after they earn one dollar over X amount.
There's no grand conspiracy to keep us cripppled.
If you're going to fight for something, fight for something real. If you're going to organize, put your efforts toward improving real people's lives, not slightly improving pie-in-the-sky chances of a cure. I guess that was what rubbed me the wrong way, feeling like Moe was suggesting putting all this effort into trying to raise money and build public will for a cause that is unlikely to succeed in any of our lifetimes. There are more pressing issues in the world than an SCI cure. There are more pressing issues for SCIers than a cure.
I'm a romantic and a bleeding heart and I've also trained as an economist. I love a good protest and even a riot or two if it's for the right cause, but damn if it don't make my blood boil seeing such energy and passion wasted inefficiently on pointless endeavors.
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