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.

Expect the unexpected...

Following on from my post earlier this week on patents, I came across a collection dating between 1825-1890s in the records of Old Castle Tinplate Company.

They don�t contain much informational value, other than the name of the patentee, occupation, brief description of invention, money involved, time period and date. They are, however, visually very striking, written on large parchment, with decorative borders and attached royal seals. 

Surprisingly one of the letters patent was for a Gustav Scheurmann, music publisher of Newgatestreet, London for the invention of �improvements in printing music when type is employed� in 1856. It was unexpected to find that the company would possess, and retain, this patent as it appears to have nothing to do with the business of tinplate. Our first thoughts were that Scheurmann could be one of the company directors, but there was no evidence of this. 

 After doing a little digging, we found reference to Guatav Scheurmann, in 1856, inventing a system of double printing of music, printing the staves and notes separately from moveable type.[1] So, we can presume that this system might have included tin in either the type or the equipment used for the printing.

Unfortunately, it seems the process never took off, and a few years later Gustav Scheurmann was facing bankruptcy: http://www.londongazette.co.uk/issues/22195/pages/4636/page.pdf

 

With some more research, I�m sure we could find out more about Scheurmann and his failed invention, but it does show how business collections have unexpected stories to tell.

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[1] Pg 68 Music engraving and printing: historical and technical treatise William Gamble. Ayer Publishing, 1972

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.

Archives and employability

As part of the �Profiting from Powering the World� project, we are exploring the use of business archives in learning and research and scoping the opportunities that might be available for building the use of business archives into courses. In light of the increased focus on student employability at universities, we are running a pilot project which uses business collections as its subject material. 

Two students are working in the archives for 6 half days over a 6 week period producing web-guides (aimed at other students) for a business collection of their choice.  It was advertised to a wide range of students, not just those who wish to become archivists, as a way to develop (and demonstrate) transferable skills such as time management, reflective analysis, critical thinking, computer literacy etc. The experiences can be used towards a new scheme recently launched at Swansea University called the Swansea Employability Award. We were amazed at the amount of interest we had, with 22 students attending an introductory session, 17 of whom applied, and eventually we interviewed 6 students for the 2 positions.

So far, it is proving a very positive, and mutually beneficial, experience. It strengthens the archive service relationship with university departments and adds value to our services to students and their research at their university. It should lead to a useful web-guide on a business collection, which would hopefully explore its research potential and could increase its use. On a personal level, I had my first experience of interviewing, designing application forms etc. It was a little daunting but I learnt a lot (for example how hard it is to get the right tone for something that lies somewhere between an informal chat and a formal interview)

The student will create a piece of work which may be chosen to feature on the University�s web pages. A large part of the opportunity involves producing a reflective portfolio (on Pebblepad) in which the student reflects on their experience, and the skills developed and gained. They can use it to work towards the Swansea Employability Award, which appears on their university transcript. All of this should have a positive impact on their CV and for future interviews.

Rachael Thomas, one of the students, was �pleasantly surprised� by how interesting the business records were, and found them �less daunting� than she thought she would. Both students have engaged with the documents really well, and have started drawing out themes such as women and finance, industrial disputes and the effect of the demise of a company on the local environment/community. They are working on the records of Old Castle Tin-Plate Company and records of Pascoe Grenfell and Sons (Copper). As they both have different academic backgrounds and research interests, I am really looking forward to reading the web-guides they come up with.  

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.

Patents

At the beginning of this project, I didn't know very much about patents having never had any flash of innovative brilliance myself. I'd also never read Charles Dickens' A Poor Man�s Tale of a Patent. I have read it now; it's a damning insight into the patenting procedure and costs in the Victorian era. I'm still waiting for my flash of brilliance though....

Very basically, a patent gives sole right to a process or invention for a stated period of time (14 years until 1920, 16 years after 1920). It protects the patentee from others using or selling the invention without permission.  

I didn�t think they would have much research potential as I presumed that they would only contain minimal details, to protect from imitations. However, as I started to do more reading, and had a look at some patents, I realise they could be very interesting. The history of patent law is, in itself, fascinating (see http://www.ipo.gov.uk/p-history.htm for a general overview).

Their value, obviously, lies in scientific or technical research, for example tracing the development of a particular technology. They could also be used for family or local history, to find out about particular inventors (patents can generally be searched by number or name).The Intellectual Patent Office adds patent specifications to the Esp@cenet database, so far this dates from 1890 (but not full coverage). The British Library has produced a guide to searching Esp@cenet here. See also the National Archives' pages on 'Inventions: patents and specifications' for where, and how, to search.

DD YIM/3/1/3: No 3695. Date: 15 Sep 1879 Letters Patent: Charles Madge for 14 years 'Improvements in the manufacture of retorts, muffles and pots for reducing zinc and other ores and in the means of protecting the same from the destructive action of heat and slag or ore'

The patents of most interest to me are the ones which have survived in business collections. These are the ones which the business had a particular interest in keeping, most likely because they worked the invention. Alongside financial papers, licenses, minute books etc, they can be a real insight into the technological processes which a company chose to use, areas of special concern at particular times, and the effect the patent had on the company (e.g. monopoly over certain processes, increased productivity or profit).

The records of Vivian and Sons Limited, held at West Glamorgan Archives (the first collection catalogued for Powering the World), contains a few letters patent kept by the company (ref no D/D YIM/3/1) one of which is the image above. The Richard Burton Archives also holds a number of letters patent, patent specifications and related correspondence in the records of Old Castle Tinplate Company (ref no LAC/87/G) and Yorkshire Imperial Metals (ref no LAC/126/F). 

I found the chapter on patents in 'Business Documents: Their origins, sources and uses in historical research' (John Armstrong and Stephanie Jones, 1987) really useful. It details the background behind patents, their uses, limitations, examples of works using them, and how they can be cross referenced with other documents.

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.

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.

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.

Powerless

I lost power Saturday afternoon. After three days I gave up keeping my place warm. Too much work. The fish in my aquarium all dead. My complaint list is long and I am not a happy camper. Worse yet my skin broke down. Saw MD, not a real problem but it could become one in a heartbeat. Very worried and in desperate need of power that makes my life go. The storm on Saturday that brought over a foot of snow at my house caused far more damage than hurricane Irene. At best, I hope to get power back Friday. Next week is more likely. I will post some pictures when power comes back. My property was hit pretty hard, likely lost my beloved American chest nut trees. Never thought I would say this after last year but I miss my clinitron bed and living room.