Stephen Hawking Wastes His Time with the NYT

Stephen Hawking is the most well-known physicist in the world. He also has ALS or Lou Gehrig's disease. I cannot understand Hawking's work. I tried to read his best selling book, A Brief History of Time: From Big Bang to Black Holes. I did not get through or understand the first chapter. How an estimated 10 million other people who bought the book, and I presume understood it, is a mystery to me. For some time now, Hawking has been totally paralyzed. Like others with ALS and those with motor neuron disease he communicates via a computer. Communication is slow and labor intensive. Hawking gives few interviews for this reason. I think Hawking is wise for the NYT interview published recently was dreadful. Apparently Hawking is "one of the longest living survivors of ALS, and perhaps the most inspirational". I should have stopped reading here as the interview just got worse as it progressed. The interview was different. It was "a kind of interview". The interviewer sent Hawking's daughter a list of ten questions before the interviewer and Hawking met. At the interview Hawking played his answers to the interviewer. Given how Hawking communicates this seems logical. Rather than see the logic in this means of adaptive communication the interviewer noted "despite the limitations, it was Dr. Hawking who wanted to do the interview in person rather than by email". How dehumanizing. How rude. No wonder Hawking does not give interviews. He is too busy and too famous to waste his time answering stupid questions.

The interview itself was based on a lecture Hawking gave at Arizona State University entitled "My Brief History". Hawking rarely comments about his disability and I suppose that is what made his lecture and this interview of interest. He did mention his disability--he had no choice really. One question stunned me. The interviewer asked "I don't mean to ask this disrespectfully, but there are some experts on ALS who insist that you can't possibly suffer from the condition. They say you've done far too well, in their opinion. How do you respond to this kind of speculation?" This question is not only rude but point blank disrespectful. What is he supposed to say, sorry I did not die in the expected time frame for others with ALS. How about I am not suffering I have a medical condition. Or how about not asking a question based on baseless speculation. I will give Hawking credit though his reply was polite. I doubt I would have been nearly as nice. He noted in part: "I don’t have much positive to say about motor neuron disease. But it taught me not to pity myself, because others were worse off and to get on with what I still could do. I’m happier now than before I developed the condition. I am lucky to be working in theoretical physics, one of the few areas in which disability is not a serious handicap".

The second question asked was simply patronizing: "Given all you've experienced, what words would you offer to someone who has been diagnosed with a serious illness, perhaps ALS." Sure let's reduce the world's best physicist to his disease, you know the one he "suffers" from. Again, Hawking was polite. He answered: "My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically."

The remaining questions concerned his work and were entirely appropriate. The final question was spontaneous--asked when they met. The interviewer asked: I don't want to tire you out, especially if doing answers is so difficult. But I'm wondering: The speech you gave the other night here in Tempe, My Brief History, was very personal. Were you trying to make a statement on the record so that people would know who you are? The answer "after five minutes I hope my experience will help other people". Does the interviewer really need to let readers know it took five minutes to provide a single sentence answer. No, it was done to prompt an emotional reaction--pity.

This sort of interview is so frustrating to me. What an opportunity was lost. I can think of many questions to ask Hawking who strikes me as a private person. To the best of my knowledge he rarely if ever answers questions about his disability. Now I know why. Like any other human he does not want to be pigeon holed according to a preconceived notion or type. He is not an inspiration to me or any other person with a disability. He does not advocate for disability rights as far as I know. Not every person with a disability wants to do this. His passion is physics. He is a physicist. Hence I admire Hawking's work not the man. His disability is not relevant in any way. If I had a hero it would be a person like Ed Roberts who advanced disability rights. Sadly, no one outside of the disability community even knows who Roberts was. Now this is a problem worth addressing instead of asking inane questions directed at a world famous physicist.

Civil Rights American Style

It has been difficult to watch the news since last Sunday night when President Obama announced Osma bin Laden was killed. The media frenzy has been intense. CNN must be thrilled; it is a classic example of media over saturation in the extreme. I am disgusted by the entire discussion. I understand but found the so called spontaneous celebrations disheartening. I was left with little doubt why most people in the Middle East hate the United States. What do they know of us? Armed soldiers and bombs that reign down death with regularity. What has struck me about the media is the endless news loop that we Americans are fighting for freedom. This has me thinking about the meaning of freedom as we know it. Americans have been fighting for the concept of freedom for over two hundred years. We have had good wars, World War II, bad wars, Vietnam War, police actions, Korean War, and now we have the endless war, the war on terrorism. It struck me last night as I watched yet another story about the death of Osma bin Laden that fighting for freedom has become a ritual. If we Americans are not fighting for something, exposing an injustice, or celebrating our freedom we are at a loss for words. We have been so busy fighting we have forgotten what exactly it is we are fighting for. It feels to me we are fighting to fight. Worse yet, we no longer have a way of measuring our supposed success or failure. Was killing Osama bin Laden good or bad for the war on terrorism? Check in at 11PM for the latest poll results.Is it not possible to think for ourselves? Do we really need a poll to tell us how to feel?

What does the above have to do with disability? If we value freedom above all else, civil liberties, what we now call civil rights comes in a close second place. we are all taught racism is bad, very bad. This is a good lesson many fail to learn. Racism is alive and well in spite of the fact we elected a black man president. In much the same way, just because we passed the ADA 20 years ago bias and discrimination did not suddenly end. This point was made forcefully by John Hockeberry. I recently attended a lecture he gave at Columbia University entitled "A Law is Just the Beginning: 20 Years of Americans with Disabilities Act". As usual, Hockenberry was an engaging and entertaining speaker. He has the rare ability to make one laugh and think at the same time. As Hockenberry talked I realized what a jerk I was when the ADA was passed. I really thought the country was going to be revolutionized. I honestly swallowed the rhetoric hook line and sinker. What a rube! I am no more equal today than I was 20 years ago. Architectural barriers abound. Social oppression though no longer blatant is still present in an ever so polite socially sanitized form (see inaccessible taxis for the future I posted about). These thoughts came to me as I was inspired to reread Hockenbery's memoir Moving Violations. Hockenberry's book is outstanding. I loved it when I first read it in 1995 and it has withstood the test of time--my time that is. Hockenberry's work still resonates deeply within in me. His experience reflects my experience. We were both paralyzed in our late teens, came of age before the ADA, and felt great self imposed pressure to excel. In terms of the present discussion, one passage in his book jumped out last night as CNN droned on.

What we call civil rights in America is people jumping through hoops for their freedom, then having their scores tallied like figure skaters in the Olympics. Uppity niggers score low, so do illegal immigrants, and welfare mothers and crips who ask too loudly why there is no ramp into the theater. "We fought for it, so it's only fair that you should have to". It is America's real declaration of independence that poisons and isolates Jews, Asians, and whites from each other. It is less about race today than it is about this brutal free-for-all of who gets what, who deserves more, who's being fair, who's taking advantage". pp. 351.

Wow, does this reflect my experience in the last decade. No one really cares about access or civil rights for people with a disability but rather does the school, work place, or bus conform to a poorly written law no one except a lawyer reads. The concept, the idea of freedom and civil rights are not even worthy of discussion. This makes me mourn for a time before the ADA existed though I do not want to relive those days. Prior to the ADA I knew who was my friend and who was a foe. Today, I have no idea. The person that slaps me on the back and gives me a big smile hello could be the same person that bitterly complains about the money "wasted on special needs" kids at school board meetings. I wish I had a solution to the vexing problems I have risen. Indeed I am ready to throw up my hands and say enough, I do not give a damn! Of course, I cannot do that. It is just not possible. I am too much of a hard ass to give the bigots of the world the satisfaction who ever they may be.

NYC Cab of Tommorrow: A Bipedal Only Cab

Mayor Bloomberg announced the winner of the "taxi of tomorrow" winner. The winner is a a suburban mom mobile, the Nissan NV200. The taxis that will come to dominate the city has lots of features people want. Passenger airbags, a GPS system, USB charging ports, separate climate controls, sliding doors, see through roof, and it gets 25 mpg. The contract between Nissan and the city will last 10 years and is worth about $1 billion in sales. Mayor Bloomberg is thrilled. He stated "It's going to be the safest and most convenient cab the city has ever had. They will be custom designed to meet the specific demands of carrying 6000,000 passengers a day in New York City traffic".

I have no idea if Mayor Bloomberg made the right choice in selecting the Nissan NV 200. But I do know Bloomberg and the Taxi and Limousine Commission do not give a damn about wheelchair access. Yes, I suppose we pesky people with a disability, especially those that use a wheelchair, are not part of the future. It is hard to get excited knowing that of the 13,237 taxis in New York City a grand total of 240 are required to be accessible. Getting a cab in New York City is never easy for a person that uses a wheelchair. In my experience a NYC cabbie would rather pick up a deranged and armed gunman before stopping for a person that uses a wheelchair. If you think I exaggerate I suggest you try to hail a cab using a wheelchair. The so called "taxi of tomorrow" is yet another sign of inequality. It is a not so subtle fuck you to every New Yorker that uses a wheelchair. In fact., I think it is an in your face sort of fuck you. We crippled people are not part of the past, present, or future. What this means to me is that for the next decade or more getting a cab in New York City will remain problematic at best. Yes, the cabs will transport 600,000 people. 600,000 people that can walk. We people that have a disability and use a wheelchair are screwed. Worse yet, I am not surprised. This is just another example of how people with a disability always seem to get the shaft. It is so common, so expected, it does not even merit shock and indignation. Only one story I read about the "taxi of tomorrow" even mentioned the lack of wheelchair access. Where is the outrage? I am mad as hell and seem to be the lone voice of dissent. How is that we have an amenity laden cab and yet one that is not accessible. The reason is simple: we value a GPS unit, we value USB ports, we value a sun roof, sliding doors, air bags etc. We value these things. They are part of the fabric of our lives. Today, I realize my existence as a New Yorker is not as important as material things. What a sad but not surprising commentary.

Money: How it is Spent Makes No Sense

A few days ago I read about my favorite invention I love to poke fun of--the human exoskeleton that enables paralyzed people to walk. Today I read 89 protesters from my favorite disability rights group, ADAPT, were arrested in Washington DC. What do these two disparate stories have to do with one another? Money stupid! Rex Bionics, a New Zealand company, has just sold its first custom fitted robotic exoskeleton to Dave MacCalman. MacCalman has represented New Zealand in the Paralympics, winning gold and silver medals. The exoskeleton is, in my estimation, silly in the extreme. In fact the words pointless waste of resources come to mind. And when it comes to resources much was spent. The exoskeleton took seven years and $10 million in development costs. Read that sentence again--carefully. And exactly how much does an exoskeleton cost? It retails for nearly $150,000 USA dollars. That is a lot of money. Now if I had a spare $150,000 I would not spend it on an exoskeleton. No, I would spend such money wisely. I would buy a high end sports car. A Porsche 911 Turbo that retails for $135,500. I would even have money left over to buy gas, go up to 135 mph, have 500 horse power, get 24 miles to a gallon, and be able to go from 0 to 60 in less than three seconds. This is may not be what everyone needs but it sure is valued by some. The point here is that the exoskeleton is about as practical as a Porsche 911 turbo. Practical or not we value such cars, priceless engineering, and walking. Walking is very nice. Driving a Porsche 911 is very nice too. But are either really important in the bigger picture of life? Not in my opinion. Would it nice to be able to walk around my house? Yes it would but it is nothing to aspire to nor is it worth spending $150,000. Waking does not define who we are as humans any more than the Porsche 911 turbo defines car making.

The exoskeleton and Porsche 911 are feats of engineering that are not needed. There are far more important things in life than the ability to walk or drive a car that costs $150,000. This is what I was thinking when I read about the 89 people from ADAPT that got arrested. ADAPT was protesting Paul Ryan's Medicaid plan that would force people with a disability into a nursing home rather than live in their own home. The issue as I understand it would turn Medicaid into block grants and reduce spending by more than $700 billion over ten years. The protesters were arrested by Capital Police for occupying the rotunda. I wish I was there for I know how sound travels in a rotunda. I bet they were loud and confrontation. ADAPT people get what is important. People with a disability, like all those pesky people that can walk, value their independence. This is something we as a society should invest in--independence and autonomy. No one can be independent and autonomous in a nursing home. In an institution you do not control your own destiny. Why we do not seek to empower people is a mystery. Why we spend invest, develop, and spend millions on things, material objects such as an exoskeleton and Porsche 911 turbos is a mystery. Which is more important, a material object, albeit a very cool one like a Porsche, or people's lives?

Mendicant Literature Then and Now

I have been spending the last few evenings savoring a book I have already read. I read the book last year and was inspired to read it again because I met the author at a conference recently. I am referring to Susan Schweik’s Ugly Laws: Disability in Public. This book not only reveals a little known aspect of disability history, the so-called ugly laws, but is based on original research and reliance on archival material no other scholar has delved deeply into. I know how hard and time consuming task because I wrote an intellectual biography of Leslie A. White that was based on archival material.

I admire everything about Schweik’s book—the writing is clear and concise. Schweik is able to illustrate larger points about disability using specific examples from the ugly laws. Even the book cover is outstanding. It has a well-known photograph by Paul Stand circa 1916 known simple as “Blind Woman”. I have looked at this photography many times and wondered what did Strand think when he took it. What if anything did this woman say to Strand? I have always found the image haunting. What was this woman’s life like? Was she happy or sad? This in turn makes me think how the lives of people with a disability have radically changed since 1916 and the enforcement of the ugly laws. To begin, we people with a disability live. That is most of us have a normal life expectation. I am proof positive of this as are many men and women who have spent the majority of their lives paralyzed. But what sort of life do we lead and how does it compare to those that came before us. Schweik, in part, has filled this gap. Schweik calls the stories of our crippled forefathers mendicant literature. Schweik writes “Mendicant pieces are books and pamphlets written by handicapped or penniless persons, usually telling their life story, and peddled by them to earn a living.”. This history of disability is not known nor is it taught widely. Sadly, such a history is not respected or valued even on college campuses. Schweik writes about a disturbing but telling experience. As she was conducting archival research she recalled “There’s something for everyone here another Harvard librarian said, apparently amused at my interest, as she brought me a catalogue organized alphabetically [Amputee] followed by [Blind] and then [Crippled]. Here… presided over by dreams of free speech, by ghosts of eugenics, and by the medical catalogue of impairments, mendicant literature speaks of the ugly laws”.

Ugly laws led to the production of medicant literature. This literature, the life history of people with disabilities, is important. It is important because it illustrates a vibrant past and has troubling implications about the present. We people with a disability have not created an effective political coalition. We are hopelessly splintered. Blind people advocate for themselves as do the deaf, the paralyzed, etc. While much advocating is performed it is largely ineffective. Have we really advanced far beyond an antiquated medical model of disability? In a word, no. I sincerely doubt people think about disability rights until it affects them directly. This is a problem we have not begun to address. All the laws in the world will not advance disability rights unless there is a social demand for such rights. As of today, I feel as though disability rights are invisible or worse an annoyance to many. Do we really need those expensive ramps and elevators given how few people use them? I would contend we as a society are hiding behind laws and regulations and bogged down in the minutiae of access when our problem is much larger and deeply rooted. We do not ask the important questions: why are disability rights thought to be different from other civil rights? Why do we tolerate inaccessible building and a shockingly high unemployment rate? Why are lifts not on every school bus in America and an interpreter for the deaf at every public event? These are the sorts of questions we should be asking. These are the sorts of questions we should be united to solve.

Callous Hands and Loss

It has been about seven months since I found the wound on my hip. I never dreamed I would still be dealing with the wound all these months later. I hate wound care and changing my dressing. It is a daily reminder of how fragile the paralyzed human body can be. I am also appalled by all what I have missed. My life since last September has been like a black hole. I missed the Fall harvest. I missed teaching a full academic year. I missed an awesome winter and did not ski once. Seven months is along time. I can now see that my body has changed. I am not better for this experience nor is my body stronger. I know my strength will come back once I am able to sit up all day and resume my regular activities. I am sure I will be kayaking at some point—surely before the end of the summer. This prospect excites me.

Since I can get up more today, a warm sunny Easter Sunday, I went for a walk with my son around my property. Yikes, I have my work cut out for me. My vegetable garden is a mess. Last Fall I did not clear it out. My garden beds around my home are a mess. The deer have had a field day. I have a tree down that I need to cut up with a chain saw and then split up the wood for the wood-burning stove. My head is spinning with all that needs to be done. This does not bother me—I love manual labor. It clears the mind and strengthens the body. It was not until I was inside and my son engrossed on-line that I had a strange sense of loss. I looked at my hands carefully and was stunned to realize my callous hands are smooth. My hands have not been callous free in thirty years. My hands have felt like like shoe leather for decades. I am both proud and embarrassed by this. I tell people with hands like mine no one pushes me around. This is both literal and figurative. My hands are like those of a man who has performed manual labor his entire life. In short, I have ditch digger hands. I am extremely self-conscious about my rough hands. They are rough and hard—an occupational hazard. No way to get around this. A solution does not exist—not that I want or am seeking a solution. Amazingly I am sad to be without my calloused rough hands. I am stunned I miss my callous hands. I have always tried to hide my hands from women. Surely a woman wants a man’s hands to not feel so hard and calloused. How ironic. I was not happy with calloused hands and now I am not happy with callous free hands. For the first time in my life, I want my calloused hands. It was not until today I realized being self-conscious was misplaced. My calloused hands are a symbol of an active life. A life I hope to get back to very soon.

Growth Attenuation and the Law

A number of articles about the growth attenuation and Ashley X have been published that discuss the case from a legal perspective. I find these articles heavy going. None have impressed me and many seem to be authored by law students who latched onto a hot button issue. I will readily admit I am not a lawyer nor do I have a thorough grasp of the technical legal issues involved in growth attenuation. However it is my hope that the WPAS remains committed to protecting the rights of children such as Ashley and all others with a disability. I would think it is in the best interest of the WPAS and Seattle Children's Hospital to continue to work together since they reached an agreement. I am equally sure the WPAS nor Seattle Children's Hospital wants to see Washington State law is not violated again. One Ashley X from my perspective was too many. I do have cause for concern after reading a letter written by Jeffrey M. Sconyers, the lawyer that represents the hospital in the Ashley case. The letter I refer to was published in response to the Hastings Center Report written by the Seattle Growth Attenuation and Ethics Working Group (I have already delved into these findings).

Sconyers makes one factual correction to the Hastings Center Report. Sconyers notes Seattle Children's Hospital did not "agree to obtain a court order prior to any future medical intervention to attenuate growth in children with developmental disabilities". Rather Sconyers states "we agreed that we would not provide such intervention unless we had received a valid order from a court of competent jurisdiction, not subject to appeal, authorizing such intervention in a given specific case". Sconyers argues there is a difference. He wrote: "We recognized that as a hospital that stood to benefit financially from approval of growth attenuation treatment, we had an irreducible conflict of interest that made it improper for the hospital to seek court approval for the care. That responsibility rests with the parents or legal guardians of the child whose growth may be limited, not the hospital."

Let's not mince words here: the hospital is passing the buck. They passed the buck in the past and are doing so again. The hospital admitted error in the past, an error that cannot ever be corrected. Illegal treatment, illegal surgery, took place. Who was to blame? The hospital and the bad legal advice Ashley parents received. The victim was a little girl. Now we are being told by the hospital attorney that it is in the hands of the court. They have an "irreducible conflict of interest". The skeptic in me wants to note why they ignored this fact originally only to see it clearly today. Leaving that aside, do we really trust the courts to protect the rights of children like Ashley from the interests of their own parents? Need I detail the myriad of ways the court has failed people with a disability in the past. I suggest if you think i am biased read the work of Lenny Davis and the legal term "bending over backwards". In short, I have absolutely no faith in the court. Remove all the rhetoric that has surrounded Ashley X and the ethics of growth attenuation and it boils down to one thing for me: we as a society cannot target one population and absolve ourselves of a human rights violation. It is not about dignity, self interested parents, or doctors trying to help one little girl and her family. It is a clear case of bias, bias in which a specific population is considered somehow not fully human. The implications of this are sobering and dangerous.