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Thursday, September 2, 2010

Fox News, John Stossel and a Disaster to Come

I just read over at Planet of the Blind John Stossel, a fierce and long time critic of the ADA, will have a show on tonight at Fox News. Yes, more misleading anti-ADA rhetoric under the guise of journalism will reach millions of viewers. The program airs at 9PM tonight. If readers want to be aggravated and angered beyond comprehension I suggest they tune in. Once calm at some point tomorrow I will post my reaction. And there goes my night--I am sure to be upset as Stossel has chosen to reference Walter Olson and Greg Perry. These two men hate the ADA as much as Stossel--hard to imagine but true.

New Ways to Create Social Change

I think the disability rights movement is stagnant. We rely on time tested methods of demonstration and civil disobedience. In the past some actions taken by groups such as ADAPT and Not Dead Yet have been highly effective and I deeply admire the organizers of these groups. Go back a bit farther in history and through the magic of YouTube you can watch protests from the 1970s. I love to watch these old videos--especially the ones posted by the Disability Rights and Education Defense Fund. I get a chuckle at the the clothes people wore, myself included, and shake my head when I see wheelchairs circa 1978. These were real clunkers, mass produced by Everest and Jennings, that were nothing like what people use today. But what is on the forefront of my mind when going down memory lane is how effective demonstrations were. People with disabilities were united, tough, fought the establishment with vigor and for 40 years more often than not won. Forty years of legislation empowering people with disabilities is the legacy of this success. I don't see such successes taking place today. I see people with disabilities under assault by draconian budget cuts designed to hurt the most vulnerable. I shudder when I read the statistics about unemployment and worry about how people with cognitive disabilities are cared for. I see the rise of animosity directed at those that do not fit in on the part of conservatives--think the Tea Party. Worst of all I see and read about ineffective methods of protest reduced to sound bites on local news programs or used as filler in newspapers.

What is the point of the above? We live in an information age that boggles my mind. Information moves at speeds I never dreamed possible. The internet is a large part of my life and I really wonder how I survived without it. The information that is available online is staggering--many can and do live life through on line cyber communities. This is good and bad--but today I want to focus on the good. I want to appeal to young people, our future, who see computers, Ipods, MP3 players, cell phones, etc. as integral part of life. This is the future--multimedia approaches. And this multimedia, hip, online, visually interesting, and funny approach can further disability rights. This is not what disability rights activists have embraced. Part of this is generational--I see this as a fundamental difference between myself and my son. For instance, he sees his computer as a tool, a powerful force that is meant to manipulated and enjoyed. Me, I am afraid of my computer and its mysterious contents. I just pray the damn thing works. Perhaps it is because I teach college students but I think the only way to make effective social and political change today is through online, multimedia, and creative civil disobedience. Here I am thinking along the lines as groups such as Improv Everywhere to far more obscure though no less interesting approaches taken by cripzthecomic. I suggest those unfamiliar with Improv Everywhere take a look at their "actions". Some are very funny, others stupid, but the mass appeal cannot be denied. As for cripthecomic he recently posted about something he called "stair bombing". This London Ontario based person went to a local school, spread about one dollars worth of caution tape across the entrance and posted a sign "Sorry, no access Stairs out of Order". When I saw this I laughed myself silly! All I could think of was all the "No access elevator broken" signs I have come across in my life time. I also could not help but wonder did people circle the building looking for stairs that were not out of order. I cannot help but think this caused a stir--and made people think. And this, making people think and laugh, is exactly what disability rights has failed to do lately. If we can do this, make people think and protest in a way that appeals to young people who do not separate political change from humor we might be onto something big--we might be able to make disability rights cool.

Yes, it is possible to be cool and disabled. I see this all the time when I ski and kayak. What I suggest is that we extend this cool factor to include a dynamic new approach to disability rights. To a degree we have already started this. The existence of hundreds of blogs and Facebook groups devoted to disability rights is a start. But we need to get on the cutting edge of technology and civil protests that are visually and politically appealing. I think it is possible to both teach about disability rights and laugh at the same time. Robert Murphy author of the Body Silent did this all the time before the electronic age. Sadly, I do not have the technological prowess to undertake such a project. Hence i am looking for someone I can exploit that is willing to help. I have lots of ideas about how to rail against exclusion, joblessness, and isolation that remain common place. For example, I was thinking of trying to introduce myself to my neighbors. Of course this is not possible as I own the only accessible house in my town. Now this could be very funny but equally pointed. Why do no accessible houses exist and what are the social implications? Perhaps my ideas are poorly formed but I think they have great potential. Frankly, I think we have no real choice. We in the disability rights community must keep up with the times and embrace technology and modern hip approaches to civil disobedience. Given the dismal state of the economy the need is as great today as it ever was in the past.

Wednesday, September 1, 2010

Informed Consent: A Medical and Political Myth

Since I became an adult I have signed many informed consent forms before medical procedures. I consider these informed consent forms "lawyer flotsam"--they have virtually no bearing on being informed, consenting to a procedure, or being truly aware of what is going to take place. I have signed informed consent forms handed to me seconds before a procedure began that were many pages long. Could I have read the form? Sure, but the social expectation was to sign the document and not put the doctor behind schedule. I have also been overly informed--long ago a resident that did an IVP went into great detail about all that could wrong during the procedure. The fact I had many IVPs before did not deter him from giving me a litany of possible mayhem. Had I not been a veteran of many hospitalizations I would have been very scared, convinced the procedure was a high risk.

Informed consent has been on my mind as when I had surgery weeks ago I signed a boat load of informed consent forms. In fact I signed many forms, a stunning number, that were in my estimation utterly pointless. The paper work involved in getting to an operating room is indeed impressive. Are you William J. Peace born 2/21/60? Yes, a question that was repeated by many others. I also signed a form that stated exactly what surgery I was going to have. Did this mean I was truly informed? In a word, no. However, I was a well informed patient. Why was I well informed? Because I knew the surgeon for 25 years and had spoken to him multiple times about what was going to take place. We had extended discussions about the pros and cons of surgery, the inherent risks, and post surgical care. I also read various medical journals about what was being done and knew my surgery was highly specialized and required a unique skill set. I was and still consider myself very lucky.

My level of Informed consent is not the norm. The vast majority of people that undergo medical procedures, including surgery, have a poor understanding of what they are about to experience. How for instance can a person who has been healthy their entire life and never had more than a yearly physical be truly informed when given a devastating diagnosis and told they need immediate surgery? This person will sign the same forms I did but be far from informed. What about the parents of a child that is a car accident and is seriously injured? This parent will also sign informed consent forms but be far from informed. The point I am trying to get at is medicine has a culture unto itself that few who work outside the industry can begin to understand. Sure veterans such as myself of many hospitalizations get the culture of medicine. Many people with disabilities get the culture of medicine as well. But we are not the average citizen. Complicating maters further is the fact the Catholic Church is in the business of medicine. In the USA the Catholic Church operates 624 hospitals and 499 long term care facilities. A spokeswoman for the U.S. Conference of Catholic Bishops reported "When your mission is rooted in Jesus who healed the sick, only the top quality care will do". What a great line and wonderful sentiment. Don't be fooled by such pleasant sounding words. The Catholic Church is an institution with a checkered past (the same can be said of all organized religions). What sort of informed consent takes place at a Catholic Hospital or Hospice? A very unique type in my estimation, one tied to the doctrines of the Church. For instance in Bellingham a widow is trying to force a Catholic hospice to inform patients about the Death with Dignity Act. The hospice in question, Whatcom, a Catholic owned facility, chose not to participate in the law, part of the law's opt out provision. While I am forcefully opposed to assisted suicide, I am in favor of informed consent. To me that informed consent means knowing the social and political positions of any medical facility. Thus I would never consider entering the doors of a medical facility operated by the Catholic Church. According to Ross Fewing, director of ethics at PeaceHealth, the operator of Whatcom, "Our belief is that life is sacred and that intentionally ending one's life is not something that we would support. It's being consistent with Catholic teaching. Under Catholic moral theology, it would be direct participation in the act". Again, these are nice words provided you share the same moral theology--note the use of the word theology. Religious theology should have no role whatsoever in medical decisions or the running of medical institutions.

So what would truly informed consent involve? A good relationship between medical professionals and the patient that transcends the traditional doctor patient relationship. Ideally a person and his or her doctor should share a bond of some sort or at least a mutual understanding of what is important in life. A patient should know about the doctor's strengths and weakness as well as his or her standing in the medical community. A patient should know exactly where any possible surgery and hospitalization will take place. They should also visit the institution and know what is specializes in. A doctor should also truly inform a patient about what will take place. This requires social skills few doctors possess. For instance, I want to know everything and expect a high level discussion replete with references, an expectation that was met by my surgeon. For me this is the ideal but for others this might not be what they expect or want. Hence, informed consent is myth in my estimation. It is dependent upon complex variables that differ from person to person and institution to institution. I believe hospital administrators and bioethicists truly do the best they can to create informed consent--I just believe it is not possible to generalize with regard to informed consent.