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Monday, June 7, 2010

Canoe and Kayak Screw Up--Sortof

BIRTHRIGHT from Sean Mullens on Vimeo.

It is kayak season. I try and get out on the water on a weekly basis. I am not always successful but really do my best. Paddling is great for my sometime cranky shoulders that are showing wear and tear after 30 years of pushing a wheelchair. I also like to paddle because it makes me very happy. I feel free when I am on the water and at peace with the world. I enjoy gazing at aquatic life both above and below the water. I am not fast by any means but I can go a long way--miles and miles, a fact that puts a smile on my face. While I return to certain paddle spots because I like them I also return to some places because I know help is present. Getting a 14 foot kayak on and off my car is not easy. I can do it independently but it takes a long time and is very tiring. Hence I like to paddle with my son (I exploit his height, strength, and bipedal ability) or put my boat in where assistance is readily available. New places to put in however always intrigue me. Luckily I live near the Hudson River Estuary and there are many places I can easily access the water within an hour of my home. As part of my never ending search for new places to put in I subscribe to Canoe and Kayak. I read about new boats, technology, gear and exotic as well as ordinary places to paddle. It also helps that the American Canoe Association has a major commitment to adaptive paddling. They hold workshops for certified instructors every summer--and this is exactly how I got started.

Given the above I was delighted and then annoyed to read in the current issue of Canoe and Kayak "Behind the Scenes of Birthright". Look at the short five minute film for yourself embedded above. What annoyed me was the tone of the Canoe and Kayak story about the film and the sole character Michael Mitchell, 49 who has been paralyzed thirty years. In the estimation of Canoe and Kayak the film Birthright is about "one man's extraordinary struggle" and "never has a paddling film evoked such eye-watering emotion". The camera focuses on "Mitchell's excruciating effort to drag himself and his wave ski to the waters edge". The filmmaker sets up the viewer for a "rush of emotion when Mitchell finally catches a wave and accelerates down the face. For that fleeting moment he's completely free". Oh please spare me the tear jerking hyper emotional crap. Is it a struggle for a paralyzed person to get a boat in the water independently? You bet it is. So what. That so called struggle does not make me or Mitchell extraordinary. What we share to borrow the title of the film is the breathtaking feeling once we are on the water. If anything is fleeting it is the social equality our boats empower us with. Such freedom is not present on land due to social barriers and prejudice.

This is what I wish Canoe and Kayak would write about: the real struggle involved for people with disabilities to get a boat on the water. This struggle takes place well before one sees the water. Adaptive paddling clinics despite the ACA's major commitment to inclusion are few and far between. This is problematic for two reasons: there are not enough trained instructors and one might need to drive many hours to attend a clinic (I drove over four hours to Vermont to attend a two day clinic). For most paralyzed people some sort of modification must be made in order to paddle a boat. These modifications need not be complex: for me it involved removing the existing seat and making a custom seat out of dry cell foam using lots and lots of duct tape. Adaptive clinics are in my estimation are the best way to learn in large part because water safety is of paramount importance and can never ever be dismissed. If one is lucky enough to take a adaptive paddling class the next problem is simply getting to the water--the film highlights this quite well. Virtually all paddling books are worthless--access is never mentioned. Many paddling organizations and their publications are of no help as well. For instance, the Hudson River Watertrail Association has published six editions of The Hudson River Water Trail Guide. There is no mention of wheelchair access in any edition. When I contacted the organization about this omission I was informed access information was too much work to include and no one was sure exactly what the term meant. So much for help. Another major problem is finding a paddle shop. Some shops I went to when I was looking to buy a boat were point blank rude to me--paralyzed people I was told more than once were an insurance liability. When I expressed an interest in a tour one paddle shop owner told me I was welcome but would be charged double because I represented a safety risk. Finally, boat companies and those businesses affiliated with the industry do little or nothing to promote adaptive paddling. I see many boats and gear specifically designed and marketed to women. Why not do the same for adaptive paddling? For instance I use a Hull-a-Vator made by Thule. This is a great rack for the car that makes independent loading of a boat possible. Many of Thule's ads for this rack are targeted to women. I would imagine a comparable ad with a paralyzed guy would not only sell but inspire others--others meaning other paralyzed people interested in paddling.

I suppose my criticism of Canoe and Kayak is naive--they will not sell magazines nor will they promote a knee jerk emotional response. But they would empower more people with a disability to get out and onto the water. In terms of adaptive sports paddling is a bargain. A boat can be purchased for well under $1,000 and the season in New York lasts from about April to mid October. Contrast that with adaptive skiing--a new rig costs at least $2,500 and upwards. The ski season is a mere three to four months long. I enjoy both sports but do not own a ski rig--they are just too expensive and I got more bang for my buck purchasing a boat. If you really want to know why I love to paddle watch the film Birthright. Do not think of the struggle to get to the water but rather the freedom the water offers. This sensation is universal to all paddlers.

Tuesday, June 1, 2010

Windows of Opportunity: Scary Thoughts

I had a great Memorial Day weekend. While I Was happy without access to the news or internet my son went through what appeared to be withdrawl symptoms. On the drive home he asked me "How do people live without the internet?" A question asked with great sincerity and curiosity. After a depressing morning of catching up on disability related news stories my answer to my son's question today might be "happily". What disturbed me the most was a subject I was following up on via Thadeus Pope and his thought provoking blog Medical Futility. I disagree with much of what Pope writes but respect his scholarship and do not question the factual basis of what he writes. We may disagree but he does not mislead readers. Pope referred to current debates on "informed consent"--specifically an article by Alexander Kon (Informed Nondissent Rather than Informed Consent). Kon's article led me to read another article he had written, "The Window of Opportunity: Helping Parents Make the Most of Difficult Decision They Will Ever Face Using an Informed Non-Dissent Model" in the American Journal of Bioethics (94, #4:55-62). Kon believes we have been moving toward a shared decision making strategy between doctors and patients. He also thinks doctors can "unburden some parents" as they face an agonizing decision--deciding whether a child should live or die when they face end of life decisions. In Kon's estimation between days 2 and 5 of the event that indicates there is certainty a child will not experience meaningful neurological recovery a window of opportunity exists--when it is considered appropriate to withdraw life support. Kon argues, and read this direct quote very closely:

I advocate for an informed non-dissent approach to decision making. Under such a model, the physician, with the help of other members of the healthcare team, informs the parents of the dismal prognosis and that unless life-support is withdrawn within a short period of time, the child will regain sufficient brainstem function to maintain minimal, but inadequate, respiratory function off the ventilator. After extensive discussion, the physician can ascertain to what extent the parents wish to bear the burden of decision making. When the parent appears to agree that life in a persistent vegetative or minimally conscious state is not acceptable for their child but cannot bring themselves to verbally agree with withdrawing life-support, the physician informs the parents that he will make the decision to withdraw life-support, but that the parents have veto authority over this decision.

If Kon's "non-dissent model" comes into vogue I fear many will die--that is die needlessly and before their time. Anyone that has spent time around doctors and within a hospital setting know many physicians do not communicate well (I am being very polite here). In my experience, few physicians are socially skilled, that is people I would trust to understand what my wishes are. Add in the inherent power and knowledge imbalance and a physicians words and opinion carry great weight. Indeed, many patients and their loved ones do not question what a physician states and even fewer would question what a healthcare team believes. Given this, problems abound with the non-dissent model. Parents are not passive recipients of bad news as Kon would have the reader to believe. Parents with a critically ill child find themselves in a different world--a profoundly different cultural setting where they are unfamiliar with the rules and the environmental setting. Most parents are woefully unprepared for such an experience. Now Kon wants to step up the pressure on these people, tell them they have a window of opportunity and need to make a decision now. However, if they have second thoughts, veto authority, they can inform the physician or healthcare team. Sure, they do. If you believe this I have a pink elephant for sale too--at a great price I may add.

I do not understand the medical industrial complex. The experiences I had as a child were radically different. I am not referring to the advances in science--they are revolutionary and significant, life saving in fact. What I do not get is the lack of humanity in contemporary medicine. We have great technology that can extend and enhance life but we have a gross failure to communicate. End of life issues, and by extension disability, magnify the failure to communicate. Today quality of life, autonomy and end of life decisions all require patients, parents, children and doctors to work together. This does not happen and people are too often pressed into making decisions or conversely left on their own. Kon is pressing parents or at minimum enabling them to avoid making a decision. I for one do not trust Kon or most doctors to make anything but the most basic decisions. I surely do not trust them or anyone else for that matter to make life and death decisions. But that is exactly what Kon wants--the power to make a life and death decision. He does not want this power for himself of course but for the medical industrial complex. This is not about releasing parents from making a choice as Kon argues but the assertion of power. Power is a subject I know a good bit about. I lack power as do most people with a disability. I know this for a fact as we, that is the American government, decided inequities existed and needed a law to protect the civil rights of people with disabilities--the ADA. I believe patients and parents of children have rights too. One of those rights to make the decisions for themselves and their children. They should do so without being pressured and told about windows of opportunity.

After reading Kon's paper I thought of my parents and what they experienced with me. Luckily we had an unusual physician in charge of my care--a man that empowered me even as a child into believing I was an integral part of the decision making process. He did not making decisions for me or for my parents. We did that together. No power games were played or employed. What I wonder has taken place in the medical industrial complex that has led us to where we are today. I think of Barbara Farlow and the death of her child. I think of other children and their parents that have horrific experiences with physicians making decisions for them. I think of the elderly and their loved one pondering under what circumstances will one live and die. I think of people with life altering and disabling injuries who are reliant on the expertise of those providing care. Too may are given bad advice, rendered powerless, exploited, or flat out lied to. The irony here is that we can do so much with science but as a people we are failing socially. Thus I think I was lucky to get sick when I did in the 1970s. Modern science had not taken over the medical industrial complex as we were on the cusp of technological change. Too bad that technological change has not been matched by a similar social change.