Saturday, January 30, 2010

Of Harrison Ford, Brendan Fraser & Jerry Lewis

The new movie "Extraordinary Measures" has my mind running in circles.

No, this column is not a film review. Sorry.

I'm not actually writing about the movie itself, but what it calls to mind for me.

As engrossing as the Harrison Ford and Brendan Fraser flick may be, let's face it. It's at least partly about a medical breakthrough … about how even life-saving treatments are sometimes only possible with mega-funding. Especially for rare conditions, where the payoff of success--the profit potential--is dubious.

Sad but true.

Yet what's bugging me is the way this message echoes the Muscular Dystrophy Association's mantra. You know, "Send money or these kids will die!" Or words to that effect.

I've never liked that message, the implied threat. I feel it exploits kids with disabilities, turns them into one-dimensional objects of pity.

Well, guess what? MDA IS claiming a role in the true story on which "Extraordinary Measures" is based.

The true story involves the development of Myozyme, the only FDA-approved treatment for the rare, progressive neuromuscular condition called Pompe. Which affects one in 40,000 people, according to their muscles until they become too weak to live. Myozyme isn't a cure, but it can slow Pompe enough to save lives.

It turns out MDA really was one of the behind-the-scenes funders of this life-saving intervention. I double-checked.

"Many organizations and individuals who worked over many decades on Pompe disease should take credit for Myozyme," Lori Gorski, associate director of corporate communications at Genzyme Corp., the Cambridge, Mass.-based pharmaceuticals concern that developed Myozyme, told me by e-mail. "The MDA helped support patients who took part in clinical trials of Myozyme and also sponsored early research in Pompe disease."

OK, but the irksome thing for me is this: For decades, one consistent primary theme of the disability-rights movement has been that we're fine as we are. We don't need fixing. We need acceptance, accessibility, respect, integration, education, employment ... NOT a mad search for medical miracles.

Of course, there's nothing wrong with medical interventions that extend or sustain or improve our lives. In fact, I have personally benefited from numerous scientific advances. Who hasn't?
And to be fair, some people DO want to be cured of their disabilities. Especially those in chronic pain or facing imminent death. Prominent disabled folks like Michael J. Fox and the late Christopher Reeve even lend their names to foundations devoted to finding cures.

But I can't help feeling that focusing one's energies on medical remedies for what are truly societal problems is, at best, a distraction--a misdirection. If you're fighting a disease, you're not advocating for disability rights.
Am I unfair? Oversimplify-ing? Surely, it's possible to believe in disability rights AND support medical break-throughs at the same time. Yet I just don't know how a person with a disability can get on with his or her life if he or she is obsessed with finding a cure. Maybe it's me. But isn't the medical message intrinsically saying, You're not good enough as you are? It's not okay to have a disability?

(I think of the African-Americans who used to employ poisonous chemicals to try to straighten their hair and bleach their skin. Malcolm X himself did this, before learning it's the wrong way to rectify the problems of racial injustice.)

I've finally come to partial closure on this. It came to me when I was watching TV and there was a commercial for a new Alzheimer's drug.

What came to me was: there are so many disabling conditions! So many worthy targets for pharmaceutical research. How is one to choose which is most worthy of scarce R&D dollars?

It's great that these treatments exist, and more are on the way. But we're never going to solve all the medical problems. There will always be some people with disabilities. Polio is all but cured, for instance, but you can't stop people from breaking their legs while skiing, or contracting multiple sclerosis, or getting age-related infirmities.

The disability-rights movement seeks to make the world better for all people with any type of disability. Our mission is therefore broader than any clinical lab's can ever be.

After all, what happens to those facing chronic pain or imminent death while they're waiting for a cure? Or those who aren't interested in one.

What's more, a more tolerant, accessible and inclusive society benefits everyone.

Enough! I welcome reactions from readers.


  1. I think that a fine line exists between "getting rid of a disability" and "improving quality of life". As someone training to be a researcher and physician (and working on some very basic-science research on SMA, incidentally) I would hope that I am lying on the "improving quality of life" side of that line, but I guess I hadn't considered the fact that those with conditions like SMA, muscular dystrophy, etc. may not WANT a cure/treatment. In fact, I don't think I ever saw it from that angle.

    One of my goals for my career is to improve quality of life for patients, and I would think that "finding a cure or treatment" would take me toward that goal. I will be sure to consider the flip side of that message ("I am improving you because you are not good enough") as I move forward.

    The only thing a little perspective will do is improve my abilities as a physician, I hope!

  2. I think there is a huge distinction between disability and disease. The search for a cure for AIDS isn't aimed at eradicating disability, it's aimed at prolonging life. Down Syndrome is a disability and the 'cure' imagined by eugenics is elimination. I find this distinction helps me keep things, even end of life issues, clearer. (Although admittedly there are situations that are not that clear - but over all, it works for me. Love your blog.

  3. Boy this is a complicated topic fraught with conflicted feelings. As the able-bodied parent of young child with SMA (type II), I feel myself walking a tightrope between (1) unbounded love and pride in my boy just the way he is and a firm belief that he's perfect just as he is while the world is imperfect in its limited conception of humanity and failure to value all the wonderful diversity of life (not to mention the lack of accessibility), and (2) an unspoken hope that an effective treatment will come along--not to "cure" his disability, but to improve his health and reduce the risk of pneumonias and other scary things.

    Thank you for your thoughts and insights -- blogs like this one really help as I strive to navigate this complex path and do right by my son.