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Wednesday, June 8, 2011

You Cannot Kill a Bad Idea: The Exoskeleton Lives

Berkeley Bionics, the California based developer of the the exoskeleton I have railed against is in the news again. In a media release they have announced a partnership with ten of the nations leading rehabilitation centers. Yes, the exoskeleton is going to be used at ten leading centers for rehabilitation. I do not know whether to laugh or cry. I am sure Berkeley Bionics is thrilled--the stock worth will surely go up. The rehabilitation centers, some I admire, get a cool new toy to play with. This will draw newly paralyzed people and the skeptic in me wonders if this too is about profit margin. These ten rehabilitation centers will become the first "eLEGS Centers in the world". If there were audio to this blog you would hear an audible groan.

I am still stunned the exoskeleton gets heaped with such praise. It was one of CNN's top ten innovations, a Wired top ten gadget, and one of TIME's best inventions, all in 2010. The hype and media reception over this device puzzles me. I get the hype coming out of Berkeley Bionics--they are a corporation, a new one at that, trying to make a name for themselves. Thus I can dismiss words from Eythor Bender, CEO who thinks "We are on the verge of a new era of mobility for people with paralysis, using bionic exoskeletons -- first in rehabilitation centers -- and later making them available for home/personal use. We have been fortunate to team up with some of the most respected rehabilitation centers in the world, embarking on this important journey". The journey Bender refers to I would suggest is first and foremost one designed for profit. That profit starts with creating customers in rehabilitation centers too naive to understand the larger implications of the exoskeleton.

I do not blame newly minted paralyzed people with wanting to try out the exoskeleton. In theory it sounds like a good idea. I do not blame rehabilitation centers for trying this new technology out either. I would think there is some possible medical benefit to the exoskeleton, especially for a very young person with a spinal cord injury. And since I am an American, and we Americans love to play the blame game, where does the blame lye in the glorification of the exoskeleton? I place blame blame on American society at large for consistently refusing to perceive wheelchair use as anything less than a tragedy. Terms like "wheelchair bound" are used daily and we as a nation refuse to value people that use a wheelchair. We refuse to make our buildings accessible--courts, schools, stores, stadiums, airports, mass transportation centers, hospitals, universities, etc. I have encountered obstacles at each one of these places--not twenty years ago when the ADA was passed into law but today. What happens when I complain about the lack of access? I am deemed unreasonable, a bitter cripple who wishes he could walk. This line of reasoning makes me crazy. It misses the point so badly it would be laughable if it were no so common place. I am mad because we do not value access--it is not expected or desired. We only provide access because it is the law. That law, civil rights legislation called the ADA is begrudgingly adhered to but no one really cares. If people cared I would not encounter the needless architectural problems I come across daily.

Into the void of not caring about access for people with a disability, by access here I mean equal rights not only terms of architecture but civil rights, we waste valuable and limited resources with dubious inventions like the exoskeleton. This highlights a problem that has plagued the ADA--the notion of a "reasonable accommodation". The people who decide what is reasonable are not people with a disability--they are simply not in positions of power. Into this void steps (pun intended) the exoskeleton. Anyone who can walk thinks walking is the best form of locomotion. They are right it is what the human body was designed to do but I would argue a wheelchair is no less efficient means of motion. I do not know a single content person that uses a wheelchair that dreams or has ambitions of walking again. We simply move on with life. We get jobs, have a career, family,etc. If we have any mutual desire it is for more efficient reliable wheelchairs. Here is where I get upset--imagine if the resources put into the development of the exoskeleton were put into wheelchair technology? What inventions, new designs, different materials could have been developed as a result? I assure you finding a high end wheelchair is no easy task. American manufacturers have no interest in the development of high end wheelchair because insurance will not pay for such wheelchairs. And insurance drives the wheelchair business.

Do not take my extended complaints about the exoskeleton to infer I am anti technology. Nothing could be further from the truth. My point is that all technology has a social element and I cannot overlook the very bad message the exoskeleton sends. Indeed, it makes me mourn for a simple time when people who were paralyzed were told point blank you are paralyzed and will never walk again. Yes, this is a hard reality to accept. However people, once paralyzed, need to maximize the muscles they can move and this is where technology need to be directed. Thus while the exoskeleton makes headlines another technological innovation received scant press. Here I refer to an invention that I think combines technology with an additional cool factor. The New York Times reported about a device that enables a high level quad to steer his or her wheelchair via a tongue piercing. The magnetic stud would allow a person to steer the wheelchair with their tongue thereby negating the need for a sip and puff wheelchair. This is exciting to me--it combines non traditional body modification and technology in a way that truly empowers a person (curiously this story appeared in the Health section of the NYT and not Technology section).

The point I have tried to stress is that technological innovation is designed to meet a perceived social need. There is no need to walk after a paralyzing injury. The only need I have along with all those who are paralyzed and even more generally disabled in in some way is to be valued, our simple presence wanted. This starts with being treated equally--that means equal access to all parts of society. This is very much a minority viewpoint. To consider one's paralyzed body equal requires going against the social grain. I have been doing this for the past thirty two years and hope someday it will no longer be necessary. Inventions like the exoskeleton and the resources used to develop it make me doubt that day will be coming any time soon.