OmegaMom

A few months ago, yet another TED talk came across my radar.  This one was given by Aimee Mullins, a young lady who was born with missing fibula bones and had her legs amputated at age one.  Mullins went on from there to become a super-achiever–she received a full scholarship from the Department of Defense to attend Georgetown University, and became a record-winning athlete in Georgetown’s track team.  She competed in the paralympics, received modeling contracts, has acted in motion pictures, and is a motivational speaker.

At the TED talk, she spoke of disability being a chance to be “more”:

I came away from this video excited, thrilled, wondering “what’s next?!”

At the same, time, however, in the midst of all the gosh-gee-golly-wow that I felt, there was also an overwhelming feeling that this woman’s excitement for the future of prosthetics and the possibilities they open up for her and other was…well…a function of a position of privilege.

See, she’s young, she’s beautiful, she’s obviously wildly intelligent and vividly motivated.  She has people falling all over themselves to show her their latest-and-greatest prosthetic advances so that she can be a spokesman–albeit tangentially–for their new product.

Let’s look at a different amputee, shall we?

Let’s talk about D.  D. came down with diabetes–severely–in his thirties.  It could have been due to his addiction to Dr Pepper (doubtful, but it was a serious addiction!); one version is that his diabetes was caused by a severe blow to his abdomen from his on-again, off-again common-law wife and mother of his children, which deposited him in the hospital with trauma to (among other things) his pancreas.  But diabetes definitely runs in his family; his father had Type II, his grandmother had Type II, his cousin developed it in his forties, and no doubt there will be others.

Although the doctors were–as I understand it–overwhelming in their insistence that he needed to care for himself as a severe diabetic, including watching his blood sugar with an eagle eye, D. lived in denial, continuing his Dr Pepper addiction and sort of waving the diabetes away.  In his forties, he began getting severe foot infections.  He didn’t take care of one, and didn’t go to the doctor for a long time, and then there was a question of whether his doctor was a quack (one point of view) or whether he just wasn’t following doctor’s instructions very well (another point of view).  Anyway, as is common among diabetics, the infection in his toe turned gangrenous, it had to be amputated, and then things didn’t heal, so he had to have the foot amputated.

A year or so later, the other foot had to come off too.

D. was on Medicaid (I believe).  The insurers were reluctant to purchase prosthetics that were any good; oh, they’d buy the cheapest of the lot, but those (as I understand it) didn’t fit very well, were hard to walk with, and, what with one thing or another, D. ended up wheelchair-bound.

D. was not young.  He was not attractive–not ugly, but not attractive.  He was definitely intelligent, but rather than being a go-getter, he was the kind of guy who was always looking out for ways to “get around”, “get by”.  (This was, I must say, a severe frustration for the remainder of his family.)  He was the kind of guy who was irritated by other people trying to make him do things, like, say, the cops; but when someone else trespassed on his turf, he was indignant when the cops didn’t do anything.  Nobody was pounding on his doors offering him bigger-better-faster-more prosthetics.  And his insurance certainly wouldn’t offer anything but the basic.  In the end, his being wheelchair-bound cost him his life; his house was set on fire, he was upstairs and unable to escape, and he died.

There are 80,000 to 84,000 foot amputations each year in the U.S. due to diabetes.  A basic leg prosthesis starts at $2,000, with additional costs from physicians and prosthetic specialists raising the cost up to $10,000.  As someone commented on a Digg posting about Mullins’ TED talk, “most of her prostheses are likely already on the market (all except the arty ones, which appear to be custom designed). no prosthesis is “mass produced” they all have to be individually fitted and cast, sometimes more than once… below the knee prostheses average $8,000 - $16,000. the ones that are for running start at around $22,500. prosthetic limbs are horrendously expensive. an above the knee prosthesis can cost as much as $32,000. it is a huge problem facing the disabled community because health insurance almost never fully covers it or repairs, alot of coverage is as low as a $1,500 annual limit for prosthetics, which in most cases doesn’t even cover repairs.”  Steve, at My New Leg, takes you through the process of (a) getting a new prosthesis, (b) the complications, (c) dealing with insurance; his process starts here.  All the comments I read from either amputees with prosthetics or health professionals who deal with them made it very clear that it’s very expensive to get good prosthetics and it’s very difficult to get insurance to actually cover it.

Aimee Mullins is excited by the possibilities in prosthetics.  She has twelve pairs of legs; she can switch between any pair any day she wants.  (Which sort of reminds me of Princess Langwidere from Ozma of Oz (chapter here), who was able to switch heads depending on what she wanted to look like each morning–Langwidere wanted Dorothy’s head for her collection…)  Mullins is passionate about the future, about how people who need prosthetics can pick and choose what their new abilities are going to be.  But in her talk, she glosses over–actually, she leaves out entirely–the fact that her situation is far from the norm; she, by virtue of her go-getter personality and good looks, has a much better prognosis, prosthetics-wise, than, oh, 98% of the amputees out there.  My brother D. was one of those 98% who live in the real world.

Other commenters on the issue…

Reminds me