|Martha Says "It's a good thing".|
Recently, an academic fellow from Boston named William MacAskill, who is, reportedly a "moral philosophy research fellow at Emmanuel College, wrote a silly little article about the ALS/Ice Bucket Challenge. I'm loath to post the link but here it is. The themes, as best I can figure out are twofold.
First by putting ALS front and center (for a change), the effort seems to be raising money for research. In doing so, MacAskill sees charitable giving coming from a pot where there is only so much soup; i.e. not an "ever expanding pie" but something that gets its fill and no more. So if ALS dips into this pot and takes a teaspoon full, some other "needy" charity will get less. "So, because of the $3 million that the ALS Association has received, I’d bet that much more than $1.5 million has been lost by other charities". He actually wrote the "I'd bet" part.
Second, Mr. Ethics doesn't like that ice bucket thing because the act, particularly on Facebook where it is often posted, is some sort of "look at me...see how great I am for doing this" stunt. It isn't anonymous as "good giving" should be. MacAskill calls it "moral licensing". "The explanation behind moral licensing is that people are often more concerned about looking good or feeling good rather than doing good. If you “do your bit” by buying an energy-efficient lightbulb, then your status as a good human being is less likely to be called into question if you subsequentlysteal". (he really wrote this!)
To say that I think MacAskill is full of shit is an understatement. I fear that he missed all the logic classes available to him, got his head stuck up his ass at one point, and someone said "Hey, we need a head-up-your-ass research fellow here at Emmanuel, wanna play"?
The amount of money - new money - is about $4 million; a tidy sum...think of it as Exxon's per hour net profit. Altogether ALS research is in the $30 million range - about $1,000 for every ALS patient in the US. The reason that there are only 30,000 or so ALS patients is, of course, that only "outliers" live 5 years and most die in three years. So the number of new cases roughly equals the death rate. By the way, ALS is fatal. It is a death sentence plain and simple. As one of my co-ALS friends said "the bullet has already left the gun".
It is also a death sentence with a price-tag. It costs about $150,000 to die from this disease and its money spent only to make another day's survival happen, as ALS has no cure.
I've got good insurance thanks to Medicare and Supplemental and Prescription coverage and during my first year with ALS, it hasn't been all that bad financially. However, the dog days have yet to come. I'm not asking for anything nor will I, except that when someone dreams up a stunt of sorts that shines some light on having this disease and tries to raise some money to even find a pill that gives you something other than the current 2-3 extra months, I think it is a good thing.
And Mr. MacAskill, the research fella at Emmanuel, remains full of shit. And I'm emailing him this link.