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Thursday, December 1, 2011

Waking Man Circa 2012: Exoskeletons By Extension

I find technology magazines and technology geeks to be devoid of any social awareness. I thus avoid such publications with one exception--i like to read about how technology people envision the future. Such predictions are almost always wrong--spectacularly wrong. Think the Jetsons wrong. My son sent me a link to a typical envisioning the future article. I was not enthused but he always has a good reason for sending an article to me. I am interested in not only the content of any link he sends but wonder what inspired him to send it in the first place. As a parent I am interested in knowing how his mind is working as a college student. As lunch time approached today I printed out the link, "23 Incredible New Technologies You'll See by 2021". Imagine my chagrin to read that paralyzed people will be walking by 2012--well sort of walking. This claim is grossly wrong but that is not the point. I now get why there is no chance my favorite invention to make fun of, the exoskeleton, will not go away.

Under the heading The Paralyzed Will Walk there is the proverbial but. The paralyzed will be walking but "not in the way that you'd imagine. Using a machine-brain interface, researchers are making it possible for otherwise paralyzed humans to control neuroprostheses--essentially mechanical limbs that that responds to human thought--allowing them to walk and regain bodily control". A photograph is even included of a man, muscular arms crossed with a skull cap on and hundreds of wires running down his back. Looks to me like dread locks gone wrong! It also sounds a lot like a high end exoskeleton. Deep pockets have been invested in the exoskeleton. What I call the cure industry has embraced this costly idea that has dubious value at best. It made me think how lucky I was to be paralyzed 33 years ago. Modern rehabilitation was being formulated in the 1970s and 1980s and patient care came first. Today things are radically different. Present day rehabilitation is both terrible and wonderful. The truly terrible part is the cure industry that sells false hope and preys upon the newly paralyzed who are fixated on walking. Don't get me wrong, cure for paralysis is a worthy goal as we humans were designed to be bipedal. However a modest bit of research shows we are a very long way from anything that resembles a cure for paralysis. For a practical person such as myself, that means moving on with life using a wonderful alternate means of locomotion--the wheelchair. A spectacular invention that empowers millions of people. In part this is why I hate the idea of the exoskeleton: it glorifies walking as the one and only means of locomotion. This sends a bad message to paralyzed people. Essentially walking is good, wheelchairs are bad. Let's look at it this way and see the folly. Imagine are a paraplegic such as myself. I have the following choice. To start my day I can transfer from bed to wheelchair and go. Time involved less than 30 seconds. Alternatively I can put on a skull cap with dozens of wires and then strap over half my body into "neuroprotheses". Call me crazy but this does not sound like it is an efficient use of time or movement. And here is where culture rears its head. We Americans value technology--the more complex and involved the better. Thus we will dump hundreds of millions of dollars into the exoskeleton but categorically refuse to provide the most basic support services for people with a disability to lead an ordinary life. This makes no sense and many paralyzed people suffer as a result. Needless social isolation and rampant unemployment is the norm. How I wonder can this be tolerated?

I would like to identify something positive about the development of the exoskeleton but have utterly failed. However, there is no doubt in my mind researchers will continue to spend vast amounts of money into the development of the exoskeleton. The reason for this was made clear in the article. Apparently "the same systems are also being developed for the military, which one can only assume means this project won't flounder due to a lack of funding". Great, just great. The real market for the exoskeleton is not paralyzed people but rather its military development. I guess we need the exoskeleton so military men and women can carry hundreds of pounds of gear. Given how insidious the military industrial complex has been weaved into the fabric of American society since World War II the exoskeleton will continue to be well funded. A cash cow even. At the same time states nation wide will cut services for people with a disability with popular legislative support. What a world.

Monday, November 28, 2011

Assisted Suicide: Never Enough

I do not trust groups such as Compassion and Choices who vigorously lobby for assisted suicide legislation. There is no question Compassion and Choices has deep pockets, is media savvy, and an effective lobby. The message is simple--they do not want people to die in pain and great suffering. It is hard to argue this point. Too many Americans die badly. However, I contend we do not need assisted suicide legislation but rather a vibrant hospice movement. While we have many fine hospices, Americans believe hospice care is tantamount to giving up. The result is people die badly and enter hospice care far too late. This only fuels the simplistic message Compassion and Choices advocates--even with hospice care we die badly. We must do better! In my estimation this line of thought is not only misleading but dangerous. Why do I feel this way?

First, all those that advocate for assisted suicide legislation are asking the wrong question. At issue is not how we die but rather how we live. I would posit we should seek to empower those who are at risk populations--the elderly, disabled, and terminally ill. How can we insure families with an elderly parent that has dementia receive adequate support? How can we insure families do not incur great debt caring for a loved one that is terminally ill? What can we learn from people that are near the end of their life? I may appear naive in posing these questions but I am not. I went through the medical mill as a child and recently as an adult. There is no doubt in my mind that to date we Americans have consistently refused to engage in a serious discussion about end of life issues. This refusal has hurt far too many people and spawned zealots such as the deceased Jack Kevorkian, a deeply polarizing figure. Nuanced debate is totally absent. We have two sides, those for and those against assisted suicide. If I have learned anything in life, it is that we do not often get to choose the way we die. When we let others make this decision for us we have entered into dangerous territory. Any discussion of quality of life is subjective in the extreme. Long ago when I was paralyzed my level of injury was considered very high (T-3). Paraplegics such as myself abounded but I met virtually no quadriplegics. One night I asked why there were so few quadriplegics. I was told think about it. I did and remained puzzled. High level injuries, above C-8, were not often treated. The reasoning was simple--life as a quadriplegic was not worth living. Fast forward to the present--all high level spinal cord injuries are treated. The decision making has far less to do with medical facts but American cultural perceptions. This was true in 1978 and it remains true in 20011. The presence of a disability is stigmatizing. For some it is a fate worse than death.

Second, assisted suicide advocates are never satisfied. They use the terminally ill to demonstrate their compassion but are perpetually pushing for wider use. Writing about assisted suicide in the state of Washington in the Olympian on November 16, Brian Faller argued it was time to think about expanding the legislation. He wrote "to improve the chances of passage, the Death with Dignity Act was written to apply only to the choices of the terminally ill who are competent at the time of their death.
This raises the question whether, if the act continues to work as intended, we should extend the choice of voluntary euthanasia to:
• Persons who are not terminally ill but suffering a severely debilitating medical condition they judge to be unbearable.
• Persons who are not competent at the time of their death but who previously made a competent choice of euthanasia as evidenced through a special type of advance directive." If we expand legislation as suggested by Faller I would be eligible to take advantage of assisted suicide. This scare me to the very core. It truly inspires fear. Even this is not as disturbing as what is going on in the Netherlands where assisted suicide has been legal for a decade. Euthanasia advocates are lobbying for mobile euthanasia teams who will "teat" the elderly and disable in their own homes. The Dutch Medical Association has approved euthanasia for people with dementia. This is particularly worrisome because in the near future it will be possible to test people for Alzheimer's disease before symptoms develop. That is people who are clear and lucid will be told they are going to develop dementia. What is the point of such a test when no cure exists? Researchers and clinicians say such testing will help families prepare for the future. Will that future include assisted suicide? Undoubtedly.

Further examples abound but suffice it to say once legalized assisted suicide will be used in greater and greater numbers. This is the case in Washington and Oregon as well as the Netherlands. So don't be fooled by the seductive and sentimental tactics espoused by advocates for assisted suicide. I saw this first hand at the Dr. Oz Show. It was shockingly effective, chilling really how he whipped the audience up into a frenzy of approval. I implore readers to think rationally about assisted suicide. It is in your best interests as well as mine.

Wednesday, November 23, 2011

Feeling Smart and Powerful

My power went out early this morning. My heart sank for a second and then I felt smart. I called my brother and within 40 minutes he had my fancy generator going. The clinitron bed sprang back to life. A couple of lights are on, phone is charged and I am back in business. No worries here. What a relief. In fact I am glad the power is out. I wondered if the costly generator would be akin to carrying an umbrella all day, a sure thing it will not rain. So my power is out but I am far from powerless. Better yet, my son is coming home this afternoon for Thanksgiving. It will be wonderful to see him. My fridge is stocked up with his favorite foods. Life is so funny. When I was his age I thought my folks were so strange the way they took delight in feeding me. Now I feel the same way and have no doubt my son thinks I am odd. Ah, the cycles of life.

Monday, November 21, 2011

Lives Worth Living

In one word, wow! I finally got to see Lives Worth Living the documentary about disability rights broadcast on PBS. This is an outstanding film for those intimately familiar with disability rights and those that have never been exposed to this largely disregarded part of American history. All the key figures I hoped to see were included in the film--my personal hero Ed Roberts, Judy Heumann, Fred Fay, Bob Kafka, Tom Harken and many others. I am not the least bit ashamed to say I got teary eyed a number of times. This was my history, our history on film. I carefully observed not only the important protests from the 1970s but the evolution of wheelchair technology. Yes, I saw the old clunkers Everest and Jennings manufactured for decades and compared them with modern day wheelchairs. Amazing how once the corporate monopoly Everest and Jennings exploited ended around 1980 wheelchair technology advanced by leaps and bounds. This is why I liked the film so much--it can be viewed by a person such as myself who has studied disability history and find it greatly rewarding. Yet at the same time a person with no knowledge can be introduced to the subject and come away with a basic foundation in disability rights.

All the reviews I have read are uniformly positive. Only one long review has been published to date. I am sure more are in the works. The sole long review I read, "The Promised Land Will Be Wheelchair Accessible", by Jeff Shannon was excellent. Shannon, a quad since 1978, the same year I was paralyzed, weaves in a larger discussion of disability rights into the review. I met Shannon this summer and we had a long lunch on the Seattle Waterfront. We have had similar careers, me in anthropology, Shannon in film reviewing. We have our differences but there is mutual agreement on the importance of disability rights. Given this, I was not surprised that both of us got choked up when I KIng Jordan spoke about the afternoon the ADA was signed. Jordan described the definition of the American Sign Language symbol used to express a long awaited achievement, the word "Pah". I did not know this word but as Jordan describes it and signs "Pah" I was overcome with emotion. I really am equal to others. What a feeling. I just wish the reality matched the feeling.

I do have one significant problem with the film. While righteous indignation is palatable throughout the film, I worry the uplifting end could be misleading. The culmination of the film is clearly the passage of the ADA. There is a sense among those with unfamiliar with disability that the ADA solved all our problems. Yes, Judy Heumann notes that oppression and problems still exist but that is not what many will remember. I can readily envision this film being widely show in high-schools where students will think well we solved that problem--discrimination--with the ADA. Meanwhile in the same building is a student with a disability that is segregated to a resource room and transported to school on a short so called special bus. This is discrimination and segregation in a socially sanitized and accepted form no different than what tok place before the ADA was signed into law.

Wednesday, November 16, 2011

Republicans Emotional Use of Disability

http://youtu.be/y_O_6ycisIE

In the last presidential election when Sarah Palin used her son Trig to establish herself as an expert on disability rights I was appalled. Over the last two months a few people have sent me emails about Rick Santorum, a deeply religious right wing Republican. Why, people have asked, am I not blasting him? He is after all following Palin's disability handbook. That is Santorum is using his daughter who has Trisomy 18 as a emotional prop to appeal to right to lifers, those opposed to health care reform, and so called traditional values Republicans love to talk about. I simply do not take Santorum seriously but when someone sent me the link to the ad on You Tube above I had to write something. Watch this long political ad without either getting angry or sick and you have a stronger stomach than I do.

Based on the reviews posted on You Tube this ad is exceptionally successful. People love it! Sadly this does not surprise me one bit. Emotional arguments devoid of any factual basis about disability always touch the hearts of people who know nothing about disability. And the skeptic in me would estimate that means 90% of the country will fall for the rhetoric in the political ad. This makes me crazy as a quick google search, "disability rights" will reveal a wealth of information. This information will undermine the emotional response the Santorum ad was designed to prompt. Facts people. Facts and politics. Here is a fact Santorum does not want you to think about nor do any other republicans--disability is a valid political issue. Disability has a central place when it comes to health reform, aging baby boomers, and laws such as the ADA that was gutted by conservative justices put in place by former President Bush.

Forget the sentiment, ignore the tear jerking. Lines such as "Some people describe people like Bella as ‘disabled children, I look at her and I look at the joy, the simplicity, the love she emits, and it’s clear to that we are the disabled ones, not her.” People with a disability do not need pretty words and sentiment. People with a disability need equal rights. People with a disability need equal access to education. We need politicians to support IDEA so children like Santorum's daughter will get a good education. But Santorum plans on cutting spending on education. Do I really need to tell readers exactly who will be hurt the most? Santorum is also against the Affordable Care Act. He even goes as far as to suggest people with a disability will suffer and die if it is enacted. He conveniently leaves out the fact the vast majority of disability rights groups support the ACA. The fact is health care reform will help people with disabilities. Perhaps as a Senator he is unaware that access to insurance for people with a disability is difficult at best and financial ruin common. And lest readers think I am simply spewing out anti Republican rhetoric, I am not. I have no problem with conservative politicians. I do however have a huge issue with the way conservative Republicans skew facts and question their ethics since 9/11. We thus have people like Michelle Bachman who thinks water boarding led to the discovery of real facts. So what if it did? The American government is not supposed to sanction much less torture any human being. We are not supposed to detain people without cause or legal representation but we do. We are supposed to be allowed to dissent and have freedom of speech. But when that dissent becomes inconvenient we send in the police. Here I am referring to Mayor Bloomberg who sanctioned the police raid on Occupy Wall Street. That raid took place at 1AM, the media was barred from the area, the park was declared a no fly zone and no one really knows what the police did evicting protesters. Does this sound like democracy? Not to me as I find dissent our patriotic duty.

Let me reiterate. The above is not a rant specifically against the Republican Party or Santorum. He is just the latest conservative politician to use his child with a disability as a political prop. Some of these thoughts were prompted by Steven Kuusisto with whom I will end this post. He wrote: "The more I think about the GOP the more I wonder if ever again the best in our nature will clarify for truly decent conservative people. I happen to know many such folks. That well meaning principles have been sacrificed at the alter of theocratic extremism is terrible news for our republic. This is still a nation of good people. We deserve a good Republican party. Plenty will say I'm sniffing airplane glue." I don't think Kuusisto is sniffing glue. I am surrounded by such conservatives where I live in the wealthy suburbs of New York City. Good people largely even if I do not like their politics.

Monday, November 14, 2011

Four Walls Creeping In

It has been two weeks since I found the blister on my hip caused in large part to the Halloween storm and no electricity for almost a week. I was at wound care today. The wound is better, not much but better. I am still stuck in bed and will be for a while. This is very hard. I am overwhelmingly sad. I am coming to terms with the fact I will most likely not be healed until Christmas. Even then my skin will not be up to withstand the rigors of skiing. I had dreamed of skiing out West this winter. Looks like that is a pipe dream now. And in my grim mood I wonder if I will ever ski again. I wonder if I will ever resume a normal life. It is hard to make plans knowing one small mistake can leave me bed bound for months. At least I can function. I am not in a nursing home. I do not need my family to stay in my house and care for me. But life seems very restricted. Yes, the four walls of my bedroom are closing in and I am not happy.

Tuesday, November 8, 2011

Halloween Storm: Great Havoc



This is the pretty view of my property after the Halloween Storm. Never in my life have I seen over a foot of snow fall in October. My pumpkin never got carved, something I love to do, and I feel bad for the local kids. No trick or treating took place. The not so pretty pictures involve downed power lines on my road, destroyed trees on my property, limbs and branches everywhere. The road I live on looks like a bomb hit it for days. Clean up is going to take a while, months Frankly I did not believe the forecast and was not prepared. We never get significant accumulations of snow in October. Well, this was a historic first. A record setting storm far worse than what Hurricane Irene wrought. I was without power for almost six days. I held fast for over two days until real disaster struck. One cold powerless night I went to sleep in my son's bed and buried myself under a pile of blankets to stay warm. I even wore a wool hat to bed. When I woke up I had a bad blister on my original wound. I abandoned my home, got a guest room where my mother lives, and went to wound care. I have a blister. For anyone else this is no big deal. For me this means weeks in bed again.

Some good has come out of this. Thanks to my brother I now have a working generator. It will power my bed for about 12 hours before it needs to be refueled. I learned never ever to use heavy blankets for warmth. I got to spend a few days with my mother. She is a cool old lady as my son would say. Thanks to her generosity my skin did not evolve into a huge problem. When power came back on I had the bed company service it and move it into my bedroom. Yes, I am out of my living room. I am now like many other Americans who actually sleep in their bedrooms. This enabled me to clean my living room and move all the furniture around. My living room has never looked so good or clean.

I lost an entire week due to the storm. Nothing got done as my access is the internet was limited to my phone. I missed out on a few important issues I wanted to write about--an anti accessible taxi editorial in the NY Daily News, more on the Dr. OZ show, I missed attending an anti Euthanasia conference, and more. So yes, here I am stuck in bed but my spirits are not down. After months in bed a few weeks to endure will be a piece of cake. I am not worried about ski season or teaching next semester. The only being that is having trouble adjusting is my black lab Kate. She loved being where my mother lives. She was a star, all the old folks petted her and shared lab stories. She was thrilled by the attention. And now she is confused. She slept in the living room for a year and is now back to her crate in my bedroom. She is unsure where to sleep. But we are simply happy to be home and have power. Life is pretty basic.