John Hockenberry: The next Braniacs

[Wise Young]

http://www.wired.com/wired/archive/9.08/assist_pr.html

This is a long article but I think that the following quote from the article might get some juices going...

Dubbed "the Cure" by its passionate supporters, savvy marketers, and fundraisers, this vision of spinal cord repair has a much higher profile and is far better financed than FES and other alternative-interface explorations. The Cure has Christopher Reeve as its cash-gushing poster boy. FES has Jim Jatich. Cortical implant technology has Johnny Ray. Certainly, anyone who wakes up with a spinal cord injury is inclined to hope for a cure above all other options. But one would expect medical research strategies to be more detached from the emotional trauma of disability. As someone who has lived in a wheelchair comfortably for a quarter century, it is hard to justify why the Cure would be so favored over its alternatives.

[Jeff]

...I can to disparage John Hockenberry so I guess I'll start, LOL. I'm not sure why he's so comfortable in his wheelchair. Definitely a form of mental illness. We should all try to be as happy as possible but to not want a cure is insane.

Beyond that, though, is his complete insensitivity toward cervical injuries. His comfort level is no comfort at all to those who are dependent on others for even their most basic needs, like eating and even breathing.

Someone should slap that guy, really hard.

[cass]

I liked the article. I saw no insensitivity to cervical injuries. One person he cited has absolutely no movement and another is a quad.

His perspective on the brain/body relationship is very good; a unique one that had not occurred to me.

[Rick1]

Hockenberry's usual condescending tone comes through loud and clear. Personally, I plan to exceed his comfort level.

[This message was edited by Rick on August 30, 2001 at 08:57 AM.]

[jenpenko]

Ok, I just need to reply to this one. I'm the women "a la Titanic" with the FES standing system mentioned in John Hockenberry's article.

Do I want to be in this chair forever? no...am I going to stop my life because I am in it? no. Am I going to sit around and let my body deteriorate until we find a cure? no.

I don't believe that there is a magic little pill or surgery that will magically get me walking again. However, I do envision "cure" on the horizon. Basic research to heal the spinal cord is essential, but there also needs to be funding for the therapeutic methods to get the body functioning again. Some of the FES systems maybe solutions for the therapeutic side of the equation.
FES systems help to keep the body and muscles healthy, provide additional function, and help combat secondary complications of SCI. Is it the cure-all? no. Is the technology pretty cool..sure...and it wets the appetites of those techies out there with visions of the bionic woman.

[bilby]

Jeff- I agree with you, he needs a kick too.

If he reads here, this is for him ..!.. enjoy it!!!

bill

[Shaun]

The guy makes me laugh,he cant seem to understand that not everybody wants to be a happy,shining gimp.I get up everyday smile and head out the door to kicks the worlds ass only because theres a chance i might be able to dance neked in the forest again,i'll be it a small chance but i'll take it over nothing..
.........\/PEACE
~Shaun~

[cass]

something tells me most ppl are not really reading this article. i dunno, maybe it's cause i'm an engineer, but i just reread it and he isn't promoting remaining a "gimp." he's talking about advanced technology, cortical implants, FES possibly being interfaced with that, etc. etc. he's talking about technology that can provide a new brain/body interface that exists right now.

this isn't anti-cure, it's fascinating stuff.

[firewheels]

C'mon, guys, Hockenberry isn't disparaging anyone, just encouraging us to think outside of the box a bit. I myself agree with him - take what you can to do what you can. Hope for the moon, sure, but don't let it stop you from living in the meanwhile. I'm speaking as a - what, let me count, I forgot - 36-yr post. They've been hellishly difficult (admittedly, not as difficult as the years of some others), but also lots of fun. - fw

[Wise Young]

Cass, I did not know that you are an engineer. That is great. I agree with you and Firewheel that there is great promise in the brain-electronic interface technology being developed. For example, John believes (and I agree with him) that the ibot is a ingenious device. Every time I watch my 18-year old son play a computer game, I am amazed by how a few buttons (no more than 10) can achieve such incredibly complex and natural movements of the figures on the screen. An expert pilot becomes one with his jet fighter. When we drive our cars, motorcycles, bicycles (or wheelchairs), the vehicles become extensions of our body and we can achieve incredible precision at very high speeds. Thus, it is conceivable that by placing a few input and output channels into and out of the brain, we can project our powerful brains into machines that can achieve far more than our relatively weak bodies. We are doing this every day with our computers. I totally agree with John, you, and firewheel that the technology has great potential to improve quality of life of people with spinal cord injury. I support such technology wholeheartedly both in words and deeds.

I disagree, however, with John Hockenberry's belief that somehow these interfaces and technologies are receiving short shrift relative to "cure" research. Brain-computer interface research is heavily funded by many government agencies, including the department of defense, NASA, NSF, NIDRR, NIH, ATP program of the NIST. It receive millions of dollars of funding from many major companies, including IBM, Microsoft, Intel, and other companies. Likewise, FES is a thriving multi-billion-dollar industry. At last count, there are well over 100 companies providing electrical stimulation devices of various types, aimed at many many applications. FES research has been heavily funded at many VA centers, rehabilitation, and other institutions for nearly half a century. A whole Division of NIH is devoted to developing better technology for electrical stimulation of the nervous system and muscles. I am a member of the Council of the National Institute of Child Health and Development and can tell you that this Institute's billion dollar budget spends far more on high tech prosthetics and electronic devices aimed at improving brain-computer-device interfaces than on biological solutions to disability. Assistive technology is a multi-billion industry fueled by government funding.

In contrast, the total investment into the so-called "cure" research is miniscule by comparison. At the present, the total public, private, and industry investment in biological solutions to the spinal cord injury problem is less than $100 million, a tiny fraction of the amount that is being spent on assistive technology being developed to improve the quality of life of people with spinal cord injury. In fact, in the trial forum, I have not had the time to list all the clinical trials that are evaluating assitive technologies, as illustrated by a brief perusal of rehab trials in the U.S. http://www.rehabtrials.org/Trials/trial_list.shtml

I admire and respect John Hockenberry, for his independence and sharp views on the world. However, his derogatory comments concerning Christopher Reeve and "cure" research are inappropriate. As some of you on these forums know, it requires more than backbreaking work (pun intended) to raise millions for research. It requires intelligence, great media savvy, and courage. I have never heard Christopher call anybody else names or disparage their role or contribution to the field. In fact, I have never heard anything but praise and support for non-cure research from Christopher. He has reserved his energy and ire for the true enemies of the spinal cord injury community, ignorant people who are real obstacles to research. I have never heard Christopher criticize a fellow member of the spinal cord injury community even though many attacked him unmercilously because he chose to express his vision of a cure. It is sad that this kind of misinformed backbiting is going on in our community.

Wise.