I have written a number of posts about the exoskeleton. This is an invention that simply will not die a peaceful death and go away. I am actually beginning to get worried the device will be taken seriously. I see it as yet another dubious invention designed to help paralyzed people walk. By itself, the ideal of walking, is not a bad thing. We humans, I will readily acknowledge, are designed to walk. It is the how we have navigated the world for millions of years. But it is not the only means of navigating the world--especially when a disability enters one's life. We humans are quite capable of adaptation in the face of a bodily deficit. We adapt for practical and social reasons. The paralyzed cannot walk and hence use a wheelchair. I consider a wheelchair a powerful and liberating technological revolution--note the word revolution. I cannot function without my wheelchair. Crawling is an inefficient means of locomotion, my only other legitimate option. Or is the exoskeleton the next best thing? I think not. Indeed, I have no doubt it is not. I am less troubled by its invention---it is the by product of the defense department--than I am by the social reception it has and will continue to receive. So let me be very clear: if researchers want to spend money on the exoskeleton go ahead. Just do not ask me to fund it or support the effort.
My problem with the exoskeleton is the blatant message it sends to its users and society. Walking is the ideal and only means of locomotion. Anything different, is bad, less, demeaning; you fill in the blank with your favorite adjective. We should all aspire to walk. It is the begin and end all. You cannot function if you cannot walk. You cannot be employed if you cannot walk. Society demands little of us but one requirement to be a full member of humanity is the ability to walk. Walking means you are human, walking means you are a functional member of society. If you cannot walk you are either sick, lazy, or hopelessly dysfunctional. Your life must be dedicated to walking. Lose the ability to walk and you cannot pass go or collect $200. Walking is required. We are taught this from childhood. We see images of little children learning to walk, holding their parents hand and we are moved to tears. This is just the start--our physical environment is designed solely for people that can walk. Sure there are ramps and elevators but do we really value those things? In a word, no. We add those ramps and elevators because we in America are required to do so by law. If I have learned one thing in my 30+ years of paralysis it is that bipedal people do not care one iota about my existence or how needlessly difficult my life is. It is difficult not because I am unable to walk but because my mere presence is not wanted. How else do you explain the continued lack of physical access and gross lack of social supports?
I was reminded of my low status social status and glorification of walking when I read a story in the San Francisco Chronicle yesterday, May 15. In "Exoskeleton Lets UC Berkeley Grad Take Huge Step" the newspaper reports that "Austin Whitney walked on Saturday. No faith healers were involved. Yet when the paralyzed 22-year-old rose from his wheelchair and stepped across the UC Berkeley commencement stage to shake Chancellor Robert Birgeneau's hand, the crowd of 15,000 at Edwards Stadium went wild with cheers, as if witnessing a miracle". Rather than cheer I hung my head in despair. I will never be valued as an American in my life time. Twenty years after the ADA people still do not get disability. Worse yet, the glorification took place at the University of California at Berkeley, the home of the disability rights movement. A university that Ed Roberts had to sue to attend, a university that saw the first group of "Rolling Quads" that forced themselves onto an American college campus. I was deeply depressed when I read this story. There really is no place for me in American society. Social progress is glacial. Wheelchair use is perceived to be the same failure it was when I was paralyzed in 1978. But the exoskeleton is a miracle! It is like putting on an "Iron Man suit and acquiring super powers". How we Americans love technology but are fickle in what we embrace. Wheelchair bad exoskeleton good.
Let's delve into this miracle a little bit. Researchers have been working on the exoskeleton for a decade at Berkeley. The exoskeleton requires a walker or crutches and the user must wear a back pack power supply. No mention how heavy this is. It takes months to master and no mention is made of how far you can actually traverse or the sort of terrain you can go over. In short, it took months for the user, a lead researcher and four graduate students to program the exoskeleton so it could go across a stage. This was a made for TV event. Did the user walk across the stage in the exoskeleton when his name came up in the alphabet? Of course not, he was the main attraction at graduation. In the old days this was called a freak show. I am so glad we as a society have progressed. The newspaper reports: "On Saturday, as more than 2,000 seniors in caps and gowns stood beneath chilly gray skies waiting for their names to be called, Whitney remained behind the stage until nearly all had shaken the chancellor's hand. Then, his yellow history honors ribbon flapping against the exoskeleton strapped around his gown, he wheeled his chair up onto the stage, accompanied by members of the engineering team". And yes he then rises and walks across the stage! Oh Lord it is a miracle! The crowd goes nuts! And all this can be yours for a cool $15,000, the stripped down model that is. The super cool model cost $90,000 or $60,000 cheaper then the New Zealand model. Gee what a bargain.
I never met Ed Roberts but I bet he would appalled at what took place. I am stunned a university such as the University of California at Berkeley could lower itself to such a level. Surely someone in the administration should know its history as a leader in disability rights and put forth a basic question: is an exoskeleton demonstration a good idea? What if anything does such a demonstration mean symbolically? How will such a demonstration make other people who use a wheelchair and are graduating feel? I can answer these questions. Symbolically the university acknowledges walking is the cultural ideal. Those that cannot walk and use a wheelchair are lesser humans. Those that graduated and used a wheelchair are social failures. Thus by extension I am a social failure as is every other person that uses a wheelchair. We need to aspire to walk. No walking no wild cheers.
Having been virtually stuck in my own home for the last seven months because of my wound I have desperately missed social interaction. Now that I am nearly healed and getting out more I am shocked at the routine and every day violation of my rights. I am stunned at just how unequal the world remains for those that use a wheelchair. Ah, how quickly we forget! Even a cosmopolitan city such as New York presents needless barriers. For instance I was just at the NYC Tattoo convention. I emailed the organizers and was assured the site was accessible. When I arrived there were four steps to enter and get to the ticket booth. I would think this is need to know information, How exactly was I expected to access the ticket booth independently? I was not supposed to because, well you know, people that use a wheelchair are not independent. I am expected to ask for help and use the back door entrance. Similarly I am not allowed in the elevator myself. I must have a guard press the up or down button for me. What I am needlessly deprived of is independence and respect. We as a society do not value my existence hence a lift to the front entrance is not needed. Enter through the back door, a supposedly reasonable and, dare I say cost free, accommodation. I would vehemently disagree. It is not reasonable to make people dependent. It is in a word cheap. I have value. I have rights. Too bad people that walk do not see it that way. Today I feel like a black man living in Alabama when the Jim Crow Laws were in place. Equality was decades away. The ADA was a start, the battle is far from won, indeed it seems the most basic victory is very distant.
