Good News and a Merry Christmas to All

I wish all readers a Merry Christmas. I hope Santa will be generous this year. Will be reading Twas the Night Before Christmas and the Polar Express tonight. I have great memories of reading these books to my son on Christmas Eve. The sentiments expressed in these two fine books makes me forget the commercialization of the holiday season.

Now for the good news. I received the below email from Simi Linton. If you are not familiar with her work I urge you to read her memoir and ground breaking Claiming Disability.

Justice has been served! Judge George Daniels has ruled that meaningful access to the NYC taxi system is required.

Plaintiffs Christopher Noel, Simi Linton, United Spinal, The Taxis for All Campaign, Disabled in Action brought a civil rights class action suit against The New York City Taxi and Limousine Commission, and Commissioner David Yassky. Disability Rights Advocates represented the plaintiffs.

Judge Daniels ruling calls for �meaningful access� to taxis for people who are disabled. Though he does not define precisely what that means, he writes:

�It is clear, however, that less than 2% of the city�s fleet being wheelchair accessible, resulting in the unavailability of taxi transportation and significantly increased waiting times for disabled persons who require wheelchairs, is not meaningful access. In fact, during oral argument, the TLC conceded that its regulations do not provide meaningful access to individual who require wheelchairs. It must do so.�

In a footnote, he also writes:

��meaningful access for the disabled to public transportation services is not a utopian goal or political promise, it is a basic civil right. Title II requires immediate and full compliance.�

Isn�t this terrific! Of course, there will be more news stories on this � but for now it is important to spread the word, and rally people behind this decision. We have yet to see how "meaningful access" will be interpreted - and what the true impact will be. Whatever way it is implemented, the ruling itself will certainly have an impact on New York City, and hopefully will also have broad impact on future rulings across the U.S.

Thoughts on putting together an exhibition

Part of the 'Profiting from Powering the World' involves digitising images and putting them together for a travelling exhibition to promote the catalogued collections. It will be made up of 8 pull up banners and will be launched at the workshop on 27th January.

I'm now at the crucial stage of finalising my choices of images and text to send to Waters Creative to produce the final panels. This is my first dabble into producing an exhibition, and I have found it mostly interesting, but sometimes frustrating. I think the nature of this project means I've had to take some unique things into consideration:

Collaborative working: The project is an Archives and Records Wales project involving 11 different collections from 7 different archive services across Wales. I catalogued 6 of the collections so had a reasonable idea of the highlights. I had no idea what the other collections consisted of, and very little time to find out. Robert Evans, who catalogued the North Wales collections, helpfully provided some assistance with this. It meant communicating with archive services with different resources and priorities, arranging visits, becoming a rather demanding reader, requesting lots of scanning, and spending a silly amount of time on trains. Despite the odd lost email, all the services involved were really helpful. It also meant I got to see some lovely places in North Wales.

Design: I found the design work tricky at first. There are so many collections, from a number of different industries (coal, copper, engineering, slate, lager etc),that no particular colours or themes immediately stood out. It took an age to settle on colours and layout. The intention is that it all ties together as a full exhibition, but that each banner can also stand alone. Additionally, being a Welsh project, translation is a large consideration.

Archives: As for the records themselves, I was initially a little concerned about how suitable for an exhibition these collections were. I knew they had great research potential, but these are records produced by heavy industries. Some of them are literally still covered in coal dust. They don't contain a lot of attractive marketing material, the type that you might find in other retail or banking archives, and which lend themselves to exhibitions.  However, having now looked through all the collections I've been pleasantly surprised at the range of material available. My aim was to find a good mixture, combining the aesthetically pleasing with the more informative records.

Now it's coming up to the Christmas break I have a little breather to reflect on the new skills I've gained during this process and the lessons I've learnt (so many!). Hopefully the final product will do the collections, the businesses, and the communities they affected, proud.

The Bottom Line: The Value of Business Archives for Research

 

Archives and Records Council Wales and Swansea University present �The Bottom Line: The Value of Business Archives for Research�, a free one day workshop kindly supported by the Economic History Society.


If you think business archives are too bulky, complicated or specialist then it�s time to think again! This one day workshop will bring together expert speakers to explore the value of business archives for a surprising variety of research.

Over lunch there will be a chance for delegates to meet archivists showcasing the wealth of business collections held by local and university archives across Wales.

The day�s events are free, but registration is required. Lunch and refreshments will be provided

Date: Friday 27 Jan 2012

Venue: James Callaghan Lecture Theatre, Swansea University

For a programme, registration form or more information see: http://www.swansea.ac.uk/lis/historicalcollections/archives/businessarchivesevent/ or contact archives@swansea.ac.uk

A Dangerous Love Affair with Autonomy: Symanski Life Lessons

In the last week Christina Symanski, a woman I have never met has not been far from my mind. Frankly, her death has me spooked. She lived well within driving distance of my home. She shared the same civil rights that I enjoy and yet she did not believe her life had any value. She was convinced her quality of life was abysmally low and that it was not going to ever improve. She thus chose to die. I understand what drove her to die as my struggle to live an independent life was very much in question last year. I was for many months utterly dependent upon my family and friends. This dependency left me despondent. A few things saved me from sinking into the depths of despair and depression like Symanski. Even in my darkest moments I knew powerful social factors were in play. I knew these social factors led many quadriplegics such as Symanski to believe their lives lacked meaning and value. They did not want to be a burden on family or friends. They mourned lost friendships and lovers. They had no job or prospects for employment. They feared life in a nursing home. They received substandard health care due to blatant discrimination. They were confronted with economic ruin. They were socially isolated unable to leave their homes. This is a grim reality that leads to an untold number of deaths.

When I cannot get a story like Symanski�s out of my mind I think of other people with a disability that endure. By endure I do not mean endure physical deficits but rather endure a society that would lead us to believe we are better off dead. Society embraces the dignity and autonomy of those people with a disability that want to die. These people have character! These people are brave! These people are applauded! This is an old story, a deeply ingrained stereotype that is not questioned. We truly admire people with a disability that want to die and shake our collective heads in confusion by those that want to live. This mentality plays itself out in popular culture. Hollywood produces films such as Million Dollar Baby that receive accolades. I was stunned not by the film but the audience reaction. When I saw it in the theaters the audience cheered when the main character Maggie was killed. A comparable film, the Sea Inside, was released in Spain. The courts are not free from anti disability bias. Jack Kevorkian eluded being convicted even though he killed people who were disabled and not terminally ill. In 1990 a Georgia court ruled that Larry MacAfee, a quadriplegic who was not terminally ill had the right to disconnect himself from his respirator and die. The court declared MacAfee�s desire to die outweighed the states interest in preservation of life and in preventing suicide thereby upholding his right to assistance in dying. Just the year before another man, David Rivlin, also sought court intervention in his wish to die. Unlike MacAfee who did indeed die, Rivlin changed his mind. In 2010 Dan Crews expressed his desire to die. He feared life in a nursing home and wanted to be disconnected from his resperator. I could site many other examples but the common theme remains the same�people with a disability that publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest.

The stories above infuriate me. Why is it we rally around those people with a disability that want to die and yet refuse to provide the necessary social supports that would empower people with a disability to live rich, full and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly patient centered, buzz words I often heard last year. It makes me wonder though does �patient centered� allow, justify and encourage people, paralyzed people, to die? It is a euphemism that makes people in the health care system feel better? Symanski died because she found living with a disability intolerable. The unspoken corollary is she was driven to die because social supports were woefully inadequate and medical care substandard.

I remain stunned and saddened but hardly surprised by Symanski�s death. The social vortex Symanski was sucked into that led to her death has claimed the lives of many people with disabilities. Paul Longmore, a brilliant scholar and disability rights activist, wrote about what saved his life: �One thing saved me from that fate: the disability-rights movement. Our movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination. Our movement gave me the gift of a nurturing community. It offered me a positive, disability-affirming identity. It taught me pride.� How I wish Symanski could have met Paul Lngmore and others involved in the disability rights movement.

Life Paralyzed: A Final Post

On Sunday December 11 a final post was put up on Life: Paralyzed by Christina Symanski. Entitled "Message to My Friends", Symanski gives those that knew her a final good bye. I urge everyone to read it. One passage struck me as particularly sad.

"Please know that my decision to leave this life behind was not made rashly, or without careful consideration and concern for the people I'm leaving behind. I have been fighting an uphill battle to live, every day since my accident. A big part of me died back on June 5, 2005 and my life was never the same. Everything has felt empty, and bittersweet. Every memory tainted with sadness, over everything that I've lost, everything I miss doing, and everything I had planned to do, and hoped to be.
My paralysis robbed me of the most basic human necessities (freedom, privacy, independence, and physical intimacy)."

I wish Symanski had learned to cope with paralysis. I do not necessarily mean cope with the very real physical struggles she faced but rather make a theoretical leap in logic. Comparing life with and without paralysis is inherently negative and misleading. There is life with paralysis and there is life without paralysis. You cannot compare the two--they are fundamentally different social experiences. Paralysis I would maintain robs a person of only one thing--equality. The civil rights of people with a disability are not valued and often violated. In fact, disability rights and civil rights are not considered by many to be comparable. I wish Symanski embraced her inalienable rights, rights that many people take for granted. Her death is a tragedy for her family and friends and an indictment on American society's failure to provide sub basic social supports for people with a disability.

I Hate the New York Times

I was having a good day until i read the New York Times. Yet again the NYT has published a story, in this case a review of a TV show, that left me deeply annoyed. Here I refer to a December 11 review, " Disabled Host, With the Emphasis on Able" by Jon Caramanica. A few will know Zach Anner, a man with cerebral palsy, who won a reality competition (Your Own Show: Oprah's Search for the Next TV Star) to host a program on the Oprah Winfrey Network. His show, Rollin with Zach, will air tonight. I doubt I will watch the show. But it is the review rather than his show that has me deeply annoyed. The NYT characterized Anner as "witty and charming and mildly zany. And also disabled". Why is that phrase, "and also disabled", included? In my opinion it is based on the assumption that people with a disability cannot be witty, charming and zany. Surely we people with a disability are miserable and morose. Another unfortunate passage sates that: "The inspiration in Mr. Anner�s story is implicit. Unlike most travel shows, on which the hosts feign omnipotence and fearlessness, �Rollin� With Zach� often reveals Mr. Anner adjusting for his disability. Concern for his well-being is embedded into the show, as is the sense that things will not always go smoothly."

When I read these lines I wanted to scream. Why don't things go smoothly when Anner travels? The answer is simple: in spite of the law mass transportation remains either inaccessible or problematic for people with a disability. The reason for this is not because Anner cannot adjust for his disability but rather society fails to be inclusive to people with a disability. Problems abound because people with a disability are not valued. Equal access does not exist within the travel industry. Perhaps this is the reason Anner is not "fearless". Like many people with a disability he knows all too well that when traveling barriers to inclusion are common place. As for "concern embedded" into the show, I find this demeaning. Why should this concern exist? We people with a disability are perceived to be incompetent. Thus the all powerful bipedal people will out of the goodness of their heart protect the well being of people with a disability. This logic is not just wrong but provided the theoretical justification for excluding people with a disability for decades. Paralyzed people cannot fly in a plane, they are a safety hazard. People with a disability cannot attend public school, they are a fire hazard. Exclusion was not seen as a form of discrimination but rather done for the "well being" of people with a disability. Such a sentiment still exists today in spite of the fact the ADA was passed 20 years ago.

One last example should suffice: "Both initial episodes conclude with Mr. Anner attempting a water activity, surfing and then water-skiing, which he succeeds at, with some hitches. On a chair-swing ride at Navy Pier in Chicago the look of ecstasy on his face at the freedom of movement is genuine." A few things are assumed. Water sports and sports in general are beyond the ability of most people with a disability. Sports are for fit people, those without a disability. Implied is the refusal to perceive adaptive sports, in this case a water activity, as equally enjoyable. Why is "ecstasy" on Anner's face? Simple, disability is inherently bad and restricting. Disability is always compared to normal, meaning bipedal movement. Surely Anner must wish he was normal, not disabled. This is evident by the "freedom of movement". Of course the reverse is a lack of freedom and movement people with a disability experience. Easily ignored is that it is not the lack of movement that prevents freedom but socially constructed barriers. For instance I can ski but I cannot ski at all resorts because basic wheelchair access is absent.

The review incorrectly concludes that Anner is a "role model". Who exactly is he a role model for? People with a disability. I can assure you Anner is not my idea of a role model. My role models were people like Ed Roberts and Paul Longmore. These men questioned authority, bucked the system and won. They did not win for themselves but for all people with a disability. Roberts and Longmore made this country a better place for people with a disability. This I admire far more than any television program, especially one on the Oprah Winfrey Network known for fluffy self help pablum.

Mourning for Christina Symanski: Better Off Dead?

Last week I came across a blog entitled �Life; Paralyzed� written by Christina Symanski. The blog was devoted to her �thoughts & day to day struggles living with paralysis� and �current information related to spinal cord injury�. Symanski started her blog in September 2009 and her last entry was posted on September 13, 2011. Since I discovered her blog I have read each and every entry several times. I found much of what she wrote eloquent even though I considered her views on spinal cord injury morbidly depressing. I was hooked by her passion and the raw way she expressed her emotional and physical struggles. In fact, I stayed up most of the night reading her blog from beginning to end. In the morning I googled her name and found more of her writing, paintings, videos posted on various sites, and to my great shock I learned she died two days before I discovered her writing. I was dumbfounded by her death. I still am shocked. I mourn for a woman I never met. My heart goes out to her family.

Not once in the last week has Symanski been far from my mind. Every morning I google her name in the hope of finding an obituary. Every morning I am disappointed. No mention of her death has appeared. I do not know why Symanski�s works have touched me so deeply. Perhaps her words struck a chord because they are so radically different from mine. Perhaps it is because she wrote so well. Maybe it is more basic; I am appalled by her death and morbid views of paralysis. Even more disturbing to me, she did not die of natural causes. She wrote extensively and with sincerity about her desire to die, to end her suffering. She accomplished this goal and in the manner she wrote about. Based on threads at the Care Cure Community, she refused all food and hydration. According to a woman that identified herself as Christina� s best friend �Christina passed away yesterday, December 1st, exactly two months from when she started refusing food, water, and medical treatment. She spent most of those months at home, aside from a week in a hospice facility to get her palliative meds sorted out. Everything didn't play out quite as peacefully as she imagined it would, and she was conscious up until a few days ago, but her final moments were calm and comfortable and she passed on in her own home with her family at her side.�

It is one thing to express a desire to die, to essentially starve and dehydrate one�s self, and another to follow through. Symanski�s writings illustrate her interest in a cure for spinal cord injury, struggle coping with a high-level spinal cord injury that caused a host of medical complications, foremost among them autonomic dysreflexia, and her increasing despair. In 2009 her entries largely concerned a cure for paralysis. Symanski was injured in 2005, spent a long time in critical care hospitals and was for more than a year the resident of a nursing home. She escaped the nursing home, an almost impossible feat, lived in her own apartment and was remarkably productive. She was interviewed for newspaper articles and talked at length about her artwork. She posted three well produced but maudlin videos on line about life with a high-level spinal cord injury. A cursory reading of Symanski�s posts indicate that as 2010 progressed her entries became increasingly dark. Her autonomic dysreflexia continued unabated and the solutions suggested were unacceptable.

Three posts this year were particularly dark. Here I refer to �Meeting with Fr. Doug�, May 9, 2011; �How to Die in Oregon�, May 31; �Why I think I should be Allowed to Die with Dignity� May 31, 2011. All three posts indicate she was actively seeking a physician that would declare her terminally ill and I hence be eligible for hospice care. She consulted a lawyer to discuss the legal ramifications of her desire to die. She also contacted a local palliative care consultant to discuss all her options. Just as she was driven to search a cure for spinal cord injury she was equally driven to die. This is deeply disturbing to me at multiple levels foremost among them is that she convinced a doctor, lawyer, psychiatrist, palliative care specialist and her family to acquiesce to her wishes. This is well outside of the norm and I wonder about the ethics and legality of her actions. It also reveals an unspoken truth. When a person with a disability expresses a desire to die and engages in an all out effort to die they are applauded and encouraged by others�others without a disability. Symanski�s blog is littered with encouragement and supportive words. Her express desire to die in face of a debilitating condition reminded me of a lauded opinion piece I read in the New York Times this summer. �The Good Short Life� by Dudley Clendinen was an eloquent expression of his desire to die before ALS robbed him of his dignity. Society loves people like Symanski and Clendinen who are stately, dignified and eloquent. Their desire to die is perceived to be noble. Here is the problem. No one asks why, why do they want to die? Symanski feared being forced back into a nursing home. Clendinen questioned why he should spend $14,000 a year on a medication that will extend his life a few months.

In choosing to die people like Symanski and Clendinen reinforce an ugly truth about how people perceive disability--that is one is better off dead than disabled. Of course few people will openly admit this. Jackie Leach Scully identifies this as nonverbalized bias �disablism�. She wrote � People who are nonconsciously or unconsciously disablist do not recognize themselves as in any way discriminatory; their disablism is often unintentional, and persists through unexamined, lingering cultural stereotypes about disabled lives�. This made me wonder what would have happened to Symanski if she were not paralyzed and instead had a more socially acceptable chronic disease. Would she have been allowed to dehydrate and starve herself to death? Not a chance. It is only because she had a severe disability that her desire to die was understandable, acceptable to others.

No Faith in My Fellow Human Beings

Last week I had a highly rewarding exchange of emails with a woman who is detailing her end of life experience at thedrsays.org. She is experiencing congestive heart failure and wants to die with dignity and in peace. We started our exchange as I left a cranky comment about her positive response to the Dr Oz I railed against on assisted suicide. Despite our different views we showed each other a great deal of respect that is all too often lacking when end of life issues are discussed. She is facing some very difficult decisions in the very near future. I wish her and her family well. I also urge you to read her work. It is important in large part because she is a living example that modern medical care and medical technology have created impossible ethical conundrums. I do not envy the decisions she and her family will be making. Thankfully it seems she has an excellent rapport with her physician and support of a loving family. As a veteran I am pleased to know she has received appropriate supports in terms of health insurance.

There is no proverbial but coming in this post. Rather an observation: many people who are nearing the end of their life know little or nothing about disability. Disability simply has never touched their lives or members of their family. Disability is an abstract concept and disability rights a foreign idea. But the woman I exchanged email with does have some experience. In her response to me she concluded by noting in "Dr. Oz, Montel Williams and the Bad Cripple" "my mother had polio as a child and is truly crippled by it. she has 3 daughters and growing up with her it never occurred to me that she would be better off if she took her own life. that is one reason I don�t worry about the slippery slope. we are smart enough to make the distinction between someone with a debilitating terminal illness and someone who is disabled. maybe i just have more faith in my fellow human beings."

In these few words a great divide is revealed. Those that favor the right to die with dignity are capable of seeing that those with a disability are not the same as those with a terminal condition. As this woman notes she has faith in her fellow human beings and based upon this faith is not afraid of the slippery slope. I love this sentiment. I do not share her faith or optimism in others. I do not trust the medical establishment. By medical establishment I refer to the medical industrial complex that dictates care in this country. I am even less inclined to trust my fellow man, the ordinary person, like the people on the Dr. Oz show that appeared to be happy to let anyone suffering to end their life with the full support of the medical establishment. In the case of the Dr. Oz Show anyone with a disability was clearly suffering, had little dignity, and deserved to die. The emotions of the show not the few facts put in evidence scared me. It scared me because as much as doctors would like to contend medical care is a hard science there is as much art as there is science in medical care. Culture I assure you rears its ugly head in every aspect of medical care and medical technology. By extension, culture is a significant variable in the way we die. We do not discuss end of life care--we never have and at this point given the very real ethical issues we now encounter at the end of life we as Americans desperately need to discuss the matter. We need a national debate. It is for this reason I found my exchange of emails so satisfying. Our respective views were questioned and subsequently more clearly articulated. We both learned much from a person we had a serious disagreement with.

In thinking about my email exchange and in particular the passage I quoted, I was reminded of one of my favorite books in disability studies, Make Them Go Away by Mary Johnson. In her book Johnson seeks to answer a seemingly simple question: Why is there so little support for disability rights? Well, most people do not equate equal rights with disability rights and few liberal rights organizations support the disability rights movement. The net result is many people do not think people with a disability are a minority group subject to discrimination. I find this line of thought baffling. Prejudice is rampant and it takes much more than 40 years of law making to change our deeply ingrained beliefs. When I bring up the issue of disability rights and closely tie it it other civil rights movements the most common reaction is disbelief. More than a few people have rolled their eyes and some simply say I am full of bull shit. In response I will acknowledge no one wakes up in the morning and thinks I will discriminate against a person with a disability today. But that does not mean prejudice does not exist. And this is why I do not trust my fellow human beings. The prejudice I encounter as a person with a disability is deeply ingrained. It is ever present in the form of a lack of social supports, inaccessible housing and mass transportation, employment, poverty and the list goes on and on. Think of one word--disenfranchised. When all these socially constructed barriers are eliminated I will have faith in my fellow humans. For now, I am not swayed nor do I feel equal. This jaundiced view is not nearly as nice as the sentiments my email friend expressed but reflect the gritty reality I have experienced as a person with a disability.

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.

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.

---

[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.

Wrexham Lager Company

Interesting story today on the BBC website about the sale, on Ebay, of a Victorian brewery chimney once belonging to a Wrexham brewery company.

 http://www.bbc.co.uk/news/uk-wales-north-east-wales-15474230

Wrexham was known as a 'lager town' dues to it's good supply of mineral rich water, in the 1860s it was home to 19 collieries. The most famous was the Wrexham Lager Company, registered in 1881, which exported lager around the world. Allegedly, a stock of Wrexham Lager Bottles were found as far away as Khartoum in the Sudan, discovered in General Gordon's palace.

The company was also recently in the news as the lager is set to make a comeback in a new micro-brewery

http://www.walesonline.co.uk/news/local-news/wrexham/2011/07/15/wrexham-lager-set-to-be-brewed-again-91466-29056513/

The records of Wrexham Lager Company were catalogued as part of the Powering the World project and are available to the public at Wrexham Archives. Highlights include brewing books and promotional material. For more detailed information on the contents of the collection see an earlier post here by Robert Evans who worked on the collection.

Lives Worth Living

Thursday night, Lives Worth Living, a documentary film about the history of the disability rights movement will be broadcast by PBS. The advance reviews have been outstanding. The film maker, Eric Neudel, has received many awards. Beth Haller, author of Representing Disability and an expert on the mass media, was "completely wowed by this powerful documentary that packs 50 years of disability rights history into 54 minutes." I will not be able to see the film Thursday but I am sure PBS will rebroadcast it. I urge all those with even a passing interest in disability rights and history to watch the film. I for one am deeply moved when I see disability activists from the 1960s and 1970s. For me it is like looking back in time. I get to see the old hair styles, clothes and terrible wheelchairs produced by Everest and Jennings. If this sort of imagery is interesting check out the Disability Rights Education Defense Fund You Tube videos on line.

More on Dr. Oz and Assisted Suicide

Stephen Drake at Not Dead Yet has put up another post about the Dr. Oz show. He refers to me and provides a link to my post about the Dr. Oz show. For this I am very grateful. It is very important that people read what Stephen has to say. He has been on the front lines so to speak for quite some time and Not Dead Yet is needed now more than ever. The Dr. Oz show highlighted this in spectacular fashion. Drake and Diane Coleman are forward thinkers whose voice needs to be heard. For instance, Drake anticipated the Dr. Oz show was going to be hopelessly biased in favor of assisted suicide. This has not been a good week or two for disability rights. We have the Dr. Oz show pushing assisted suicide and Mayor Bloomberg spouting off about the "dangers" of having accessible NYC taxis.

In an effort to reaffirm the rights of people with a disability and for the skeptics out there who may think I was exaggerating what I wrote about the Dr. Oz show, below is part of what Drake posted at Not Dead Yet. I had not met Danny Robert and Nadina LaSpina before last week and was duly impressed. I think their take reinforces what I wrote and exactly why Not Dead Yet is needed. I urge all to read the final paragraph very closely.


Bushwhacked in the Land of Oz

Danny Robert & Nadina LaSpina

Wednesday was a dark and rainy windy day here in the Big Apple. We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Our car service pick up was scheduled for 7:15 AM. We couldn't find the van which was parked far from our door and got soaked but we got to the accessible entrance to 30 Rock before 8:00.

Julie Maury, Bill Peace, Hope Derogatis and Ari Ne'eman, all people with disabilities and disability rights advocates, were already there. We had each been interviewed by producers prior to being invited to appear on the show. We were directed to a large elevator to the sixth floor where we all showed our IDs and were given our tickets. We were received very cordially, with big bright smiles, by the production staff who all looked like high school cheerleaders. �Are you excited to be on the show?� one of them asked. �As much as I am when I go to the dentist,� Nadina answered.


Though we had never seen the Dr. Oz show, we expected it to be low quality, shallow and (especially having read Steve's blog) extremely biased. But we had no idea of how great the bias and how blatant the hostility that awaited us in Oz's studio would be.

We were brought back to the elevator and then escorted into a small �holding room." With some difficulty, we all squeezed in. Dr. Byock, a palliative care doctor who opposes assisted suicide, stopped in to introduce himself and we all pleasantly shook hands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.

We talked among ourselves, deciding who would make which point. Very naively, we thought we would all get a chance to speak. Then a young man, accompanied by someone with a video camera, entered and introduced himself as Greg. He said he was a producer and asked us to articulate our opposition to physician assisted suicide. Each of us had something to say and he listened and asked questions. He explained that in the first segment of the show, Dr.Oz would bring out his special guest, Montel Williams, who would explain why he is in favor of assisted suicide, then Dr. Ablow would argue against, and then a woman with ALS would be brought out. Greg asked that we not interrupt or heckle, and that we would get a chance to speak after the woman with ALS.

Montel gave a dramatic performance, grabbing his legs from time to time while he spoke, his face contorted in pain. He said he wants to have a way out when the pain gets unbearable and he wants to die with dignity. Dr. Ablow gave some good arguments, saying "I would never legally allow physicians to decide who should live and who should die... physician assisted suicide is a slippery slope..." But right from the start it was very obvious that Dr. Oz and most of his audience were not interested in hearing any arguments against.

Then Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. Her attendant rolled her to a spot right in front of the panel. She sat in a manual chair, somewhat reclined, wearing a ventilator mask. A video played on the big screens, showing Dana before tragedy hit, healthy, strong, athletic... (very exploitative). Then the ventilator mask came off (the ventilator alarmed briefly) and Dana began to speak. She said she had been living with the progression of ALS for 8 years and she was tired. She hated having to depend on others for her care and she couldn't take it anymore. She said she was depressed, lonely, had no friends left and she wanted to die. Nadina and I looked at each other and said �that's why she wants to die.� Nadina quickly jotted a note in preparation for her comments.

As Dana spoke, the sighs and the sniffles from the audience kept getting louder. The cheerleaders went around with boxes of tissues, the bright smiles on their young faces now replaced by mournful expressions.

Dr. Oz asked Dana's son how it felt to live with his mom. He said it was sad and that, though he didn't really want her to die, he also didn't want her to suffer anymore. Dana's daughter said: "It's heart-breaking, unbearable to watch her suffer. She's had enough." Dana's sister, who has her health care proxy, reiterated: "She can't take it anymore. She's suffered enough." It was obvious to us (but I guess to no one else) that the family had �had enough.�

Greg had promised that after the break, we would have a chance to speak. After we heard Dana, we decided that I should go first, since my physical condition is, outwardly, very similar to hers, and my need for a ventilator is actually greater than hers. So I told my story, including my MS diagnoses, the break up of my marriage, how bleak the future appeared to me then, and the resulting near-suicidal depression. I said how glad I was that no lethal prescription was available for me then. I said that meeting disabled people and becoming part of an activist community got me out of the depression. That I fell in love with Nadina 18 years ago and, in spite of my losing function and at times becoming depressed, I lead a full, rich and very happy life.

Nadina picked up here and said that losing function often is accompanied by temporary depression, and that having available a lethal prescription would be very dangerous for someone with a progressive disability. Then she started saying that assisted suicide was usually presented as a �choice for the terminally ill,� but here we were talking about people (Montel, Dana) who were not terminally ill but had disabilities. Dr. Oz didn't let her continue. He quickly walked away with the mike, while Nadina yelled �I'm not finished.�

During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. "I'll come back to you," he said. But he never did.

In the next segment Dr. Oz brought on two more panel guests, Dr. Ira Byock and Barbara Coombs Lee from Compassion and Choices. Dr. Byock was very good, stating there was no need for assisted suicide given the availability of good palliative care. He pointed out to Dana that she could refuse treatment. He did so in a very gentle way. He asked her: �do you want to tell your doctors, maybe next time you're hospitalized with pneumonia, that you'd rather not have them do anything, let nature take its course?� (Maybe not his exact words, but something like that). Dana did not answer. Dr. Oz quickly stepped in. �Let her answer� Nadina yelled out, �she doesn't want to die.� But Dr. Oz had quickly changed the subject.

Montel kept repeating he wanted to maintain his dignity. A few times we yelled out �What do you mean by dignity?� and �Do you think we have no dignity?�

Barbara Coombs Lee didn't say much. She didn't need to. By the time she came on, the argument in favor of assisted suicide had been completed (if there ever was an �argument� � from the beginning it was clear which side Dr. Oz was on and that the show had been scripted). Dr. Ablow was booed a few times. Dr. Byock was booed when he said, "We're not talking about choice but about control. You want to make sure you die with your boots on and make up."

Every time a new segment started, Dr. Oz would say things like: �The question today is: do we have the right to end our own life if we're suffering?� or �if our quality of life has deteriorated?� On the big screens the question was: �Do you think you have the right to end your own life?� (just as sloppy and as the show�s online survey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).

The final segment was supposed to be questions and comments from the audience. We were divided by an aisle into pro and con. During the break, Nadina managed to get the attention of the producer, Greg, who interviewed us before the show. �Dr. Oz didn't let me speak,� she told him. �NDYers have a unique perspective. We want to be heard.� He answered: �I'm sorry.�

Dr. Oz let a right-to-lifer speak briefly. He called me (Danny) a hero. And Montel replied: �let's not pit patient against patient.� Julie yelled out: �We're people not patients�, but without the microphone, none of us could be heard. A hospice nurse spoke against assisted suicide, mentioning how a woman's life was prolonged long enough for her to hold her grandchild in her arms. But most of the comments were from the other side of the room. Horror stories about people made to suffer, told by someone other than the person, and you couldn�t tell the real cause of the suffering.

Nadina, Julie, Bill, Hope and Ari kept raising their hands but Dr. Oz totally ignored us. One guy said: "These Not Dead Yet members are selfish. They don't care about people suffering. They don't want anyone to have choice.� We yelled out �It's the other way around.�

Dr. Oz kept ignoring us. But at one point, he was right next to Ari and Ari had his hand raised right in front of Dr. Oz's face. Dr. Oz asked him: "Are you right to life?" Ari answered: "No, I'm with the National Council on Disability.� Dr. Oz let him speak and Ari was great. He gave some statistics about Oregon, and even mentioned the Latimer case, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.


We tried after the show to reach out to Dana. Julie tried to catch up with her and her family, but was pushed away by Dr. Oz's production assistants. All of us NDYers were extremely frustrated and agitated. We all agreed we had been setup and just used as window dressing.

That audience was a microcosm of our society. Most every one in that audience was convinced that disability is a fate worse than death. Most of those in favor of assisted suicide thought we were selfish for wanting to live no matter what. Others, like the right-to-lifers, sitting along side us, saw us as heroic and saintly for putting up with what they imagined was great suffering and not succumbing to sinful thoughts of suicide. Sitting in that studio, we saw more clearly than ever how very important Not Dead Yet's work is and how extremely difficult.