I Believe Part II

Earlier today I lauded Stephen Kuusisto's "Disabilities: Forms of a Fair Kind Among Us". He followed up this remarkable post today, June 30, with "How Many Things Are Required of a Person With a Disability to Be Beautiful?" Kuusisto began his post with a quote from Marsilio Ficino, a Platonist with whom I am not too familiar with. However, I understand why Kuusisto was drawn to the following quote: "What then is the beauty of the body? Activity, vivacity, and a certain grace shining in the body because of the infusion of its own ideas". Kuusisto thinks we people with a disability should steal this line and that we are beautiful in a Dionysian way. I am no expert on the dichotomy between Apollonan and Dianysian as discussed by Nietzsche but I do know a good bit about the history of anthropology. One of the most famous American anthropologists, Ruth Benedict, was interested in Nietzsche's work and helped develop a specialization called culture and personality--a field I have never liked. Benedict studied the Zuni culture and found "the basic contrast between the Pueblos and the other cultures of North America is the contrast that is named and described by Nietzsche in his studies of Greek tragedy". I am not so sure such a sweeping generalization can be supported by the ethnographic facts. Nor can I accept Kuusisto's generalization that people with disability are Dionysian. Sure we people with a disability have adapted, put our bodies back together in a way that is not idealized. This does not mean we accept our current form--think Chris Reeve and all those that peddle a cure for spinal cord injury. I have no doubt though that all people with a disability can relate to Dionysian experiences as we must control our rage and fury over the manner in which we are disrespected and stigmatized. Controlling these emotions turns us toward the Apollonian and controlled we must be. By controlled I mean we must channel our rage in a positive form. For me, and strongly suspect for kuusisto, that rage takes the form of writing about disability rights.

The dichotomy between Apollonian and Dionysian is thought provoking yet fails to measure up to my need for empirical evidence. I am afterall a social scientist and not a poet and do not have the luxury of making assumptions about societies or the personalities of people. This is in part why Ruth Benedict's work fell out of favor in anthropology but left a lasting impression and legacy. Her efforts to find patterns in culture to borrow the title of her most famous book was evocative. Perhaps Kuusisto is onto something here--if we people with a disability are Dionysian we surely are complex creatures and thus cannot be reduced to ableist stereotypes. We remain unique individuals with our respective quirks despite our similarities. If we are unique, and I think we are, we cannot be characterized as Apollonian or Dianysian.

I Believe

There are many wonderful writers in the field of disability studies. Foremost among them in my estimation is Stephen Kuusisto. His writing is complex and simple, funny and serious--it draws the reader in a primal way. I for one cannot stop reading his work. In short, I have a literary crush and frankly wish I could write half as well. Today I read his post "Disabilities: Forms of a Fair Kind Among Us" at Planet of the Blind (June 29) and continue to be amazed by Kuusisto's ability to make my mind come alive like a pinball machine wizard. Kuusisto maintains that disabilities are a fiction and that every day "people with disabilities must negotiate two dynamics: the literal materiality of physical systems, and (far worse) the figurative errors of hyper-semiotic normate culture--a culture addicted to a heavily marketed and entirely false idea of physical perfection". Amen, brother! To this I would add we people with a disability pay a heavy price for our failure to conform to accepted notions of physical perfection. American culture is not designed, physically or socially, for people with disabilities. We are not wanted, our presence an odious reminder of all that can wrong with the human body. This manifests itself is half hearted attempts at physical access under taken only because it is the law. And as Kuusisto writes, worse yet, are the social implications when one cannot meet minimum standards of physical perfection--minimal hear meaning the ability to walk, see, hear or think in way deemed normal. These observations led Kuusisto to write the following: read the words below very carefully:

"What do I believe? I believe that people with disabilities have a certain inner balance, a richness and clarity of their own natures. I believe that people with disabilities possess inherently beautiful forms for all form is composed of lines and planes, twists, colors, diverse arrangements. And all the better.
The interior lives of people with disabilities are harmonious with the diversity of nature itself. These things I believe. I believe the soul needs nothing added to it to be beautiful. I believe all figures of creation are beautiful. I am rooted in this. I find I cannot be moved.
What do I believe? I believe Peter Singer doesn't know enough about art. I believe that wounded warriors are only measured by the spread of our welcoming arms. I believe that one day we will look on the age of Hollywood and Milan and Madison Avenue and cluck our tongues at the slavishness of conformity and the simplicity of taste and habits that ruled these times. I'm not saying this revolution is coming tomorrow.
What do I believe? I believe in the beauty of aging. Like Ficino I believe the body is subject to time and time is beautiful. I am rooted in this. I find I cannot be moved.
What do I believe?
Art can deceive us and it can save us."

In a word, wow! I share Kuusisto's beliefs. I too believe in people with disabilities. I never see limitations when I observe one of my peers--I see human potential. I see people that have adapted, overcome baseless prejudice, endured, survived, and thrived. I see unique life forms that move and think like no other. But I am not convinced, as is Kuusisto, that art can save us. I think art must be taught and fostered. I believe that not all people are good and that for some human empathy and understanding is not possible. Some people want power and money and don't care about how they acquire it. Like all people with a disability that have put thought into their social condition, I have seen the dark side of society. Here I refer to the larger social significance of the bigotry people with a disability still encounter. This takes many forms and has profound implications beyond negative personal interactions--for instance draconian budget cuts by states from New York to California that target the most vulnerable that are the norm and widely supported in this dismal economy. Perhaps this is what Kuusisto meant when he wrote that "art can deceive us".

So what do I believe? I believe art can only save us if we force others to see its beauty. I believe people with a disability will never be equal until we force the so called normate to perceive us as equals. I believe we must demand social and architectural equality. That demand must be accepted by all. Only then will real access in every sense of the term be achieved. I believe we must help ourselves and embrace the people on the forefront of the fight for equality. ADAPT and Not Dead Yet for example must be widely acknowledged and its accomplishments lauded. They are in my estimation the special forces of the disability rights movement. Please note the obvious use of military metaphors. For us to be equal, for our art to be recognized, we must fight. I for one will not nor have I ever allowed myself to believe I am any less human than a bipedal person that towers over me as I sit in my wheelchair. To think otherwise is to accept a trip into social oblivion. Hence all people with a disability must not only demand but expect to be treated equally and with respect. This is not an easy road to traverse. One wins few friends and alienates those normates unwilling to change their preconceived ideas about disability. Like Kuusisto what I believe cannot be moved. But I would add the proviso that we must move others, force them to think and acknowledge the great contribution we people with a disability can make to society.

ADA Fantasy Land

Tom Harkin has been a long time advocate of disability rights. We need people like Harkin. He is man of power, well connected, and at a fundamental level gets disability rights. All this is good. But when I read the below I wondered if he has lost touch with reality. Below is what Harkin wrote for Ability Magazine in the June July issue. I quote the article in its entirety so reader will be able to understand my annoyance.

As we all know, this year marks the 20th anniversary of the Americans with Disabilities Act (ADA). As chief sponsor of the ADA in the Senate, I will always remember the day it was signed into law�July 26, 1990�as one of the proudest in my legislative career.
We have come a long way in the last 20 years. Before the ADA, life was very different for people with disabilities, and discrimination was both commonplace and accepted.
I still recall the hearings we conducted in both the Senate and the House, and the testimony of so many individuals with disabilities from all across America about the discrimination that they faced on a daily basis.
We heard stories of individuals who had to crawl on their hands and knees to go up a flight of stairs or to gain access to their local swimming pools. Stories of individuals who couldn�t ride on a bus because there wasn�t a lift. Stories of individuals who couldn�t go to concerts or ballgames because there was no accessible seating. Stories of individuals who could not even cross the street in their wheelchairs because there were no curb cuts. Stories of individuals who could not buy a pair of shoes or go to the movies. In short, stories of millions of Americans who were denied access to their own communities�and to the American dream.
Passage of the ADA was a bipartisan effort. As chief sponsor in the Senate, I worked very closely with people on both sides of the aisle, both in Congress and in the Administration. Senators Ted Kennedy and Bob Dole were indispensible allies. We received invaluable support from President George Herbert Walker Bush and key members of his administration, including White House counsel Boyden Gray and Attorney General Dick Thornburgh. And there were so many others�Justin Dart, advocates, other members of Congress and the Administration�whose commitment and support were instrumental in helping pass the ADA. The final vote on the ADA (91 to 6 in the Senate) sent a resounding message that this nation would no longer tolerate isolation, segregation and second-class citizenship for people with disabilities.
Over the last two decades, we have made truly amazing progress. Streets, buildings, sports arenas and transportation systems are more accessible for people with physical impairments. Information is offered in alternative formats, so that it is usable by individuals with visual or hearing difficulties. New communications and information technologies that are accessible to people with disabilities continue to be developed.
Because of the employment provisions in the ADA, many individuals with disabilities are now able to get reasonable accommodations on the job, such as assistive technology, or accessible work environments, or more flexible schedules. These reasonable accommodations are important tools in ensuring that people with disabilities have an equal opportunity in the workplace.
These changes are all around us. In fact, today they are so integrated into our daily lives that it is sometimes hard to remember how the world used to be.
Just as important, we have seen an enormous change in attitudes toward people with disabilities. Our expectation is that we will do what it takes to give individuals with disabilities not just physical access, but equal opportunity in our schools, in our workplaces, and in all areas of our economy and society.
Today we recognize that, like all people, people with disabilities have unique abilities, talents and aptitudes. And America is better, fairer and richer when we make full use of those gifts.
Every individual with a disability deserves a chance to realize the four great goals of the ADA: equal opportunity, full participation, independent living and economic self-sufficiency.
However, progress under the ADA only happens when people�people like you�understand what the law requires, and then choose to make it a priority to ensure that individuals with disabilities are included in all aspects of community life.
It�s one thing for people with disabilities to have rights on paper and a very different thing to know that they enjoy those rights in everyday practice, especially in their communities and in the workplace. We are in an ongoing fight, a never-ending struggle, to vindicate those rights.
To those of you who are on the front lines in this struggle: I thank you for the work you do every day to ensure that ADA is alive and vibrant in your communities, opening doors of opportunity and breaking down barriers of discrimination.
We have continued to advance the rights of individuals with disabilities and the four goals of the ADA with the recent passage of the ADA Amendments Act, which restored our original Congressional intent, in respect to who is covered by the ADA. We also passed the Community First Choice Option, which will increase the availability of home and community-based services for people with disabilities.
And yet, our work is not yet done. An ongoing challenge is to increase employment opportunities for individuals with disabilities. Recent surveys show that only 37 percent of individuals with disabilities are employed. These are individuals who want to work, but who are unemployed due to a variety of factors. Many individuals lack adequate support services, some employers are not providing reasonable accommodations, and others are still reluctant to hire people with disabilities.
As a consequence, an estimated 21 million people with disabilities are not employed. We must break down the barriers that prevent or discourage individuals with disabilities from working and having the opportunity for economic self-sufficiency, as we promised in the ADA. That is why I will be hosting a two-day Congressional summit in the fall that will focus on the employment of individuals with disabilities in America.
On July 26, 1990, when he signed ADA into law, President George Herbert Walker Bush spoke with great eloquence. I will never forget his final words before taking up his pen. He said, �Let the shameful wall of exclusion finally come tumbling down.�
Today, that wall is indeed falling. The ADA has opened doors, created opportunities and transformed lives. Together, we can help ensure a future of even greater inclusion, equality and opportunity for all Americans.

by Senator Tom Harkin

I don't like the Ability Magazine--it is the happy paper of disability hence Harkin's rosy view of the ADA is to be expected. Harkin is correct in much of what he writes about. Ramps, elevators, and physical access to building has improved greatly. I too laud wheelchair access and directly benefit from this form of architectural equality. Like other Americans, I can go to a baseball game and, assuming the stadium is new, have a wide choices of places to sit. I also agree closed captioning and other forms of adaptive communication has improved greatly. These physical changes in the environment are wonderful and were indeed spearheaded by the ADA. Without the ADA much of our country would not be accessible. But this access has come at a cost and we have a very long way to go before people with a disability are remotely equal. The 20th anniversary is not the time for disability rights advocates to slap themselves on the back and say "job well done" as Harkin has done. The ADA has utterly failed to change the public perception of disability nor ameliorate the social bigotry that remains the norm. People unfamiliar with disability see little blue wheelchair symbols plastered on the wall and think the problem was solved long ago. I assure you the problem is not resolved. Access, physical and social, is illusive at best. Disability rights and civil rights are not thought of as remotely similar and this represents a major failure of the ADA. I remain stunned by my social experiences that demonstrate the woeful ignorance of others with regard to disability rigths. Two examples should suffice:

Example 1: My son graduated from high-school last week. The facility was accessible in every way possible. When I arrived there was no sign about handicapped parking which on this rare occasion I was going to use. I was directed by a person directing traffic who proceeded to yell "handicapper" to the next man directing traffic. This yell was repeated again and again. Yes, I am not human I am Mr. Handicapper! After dropping off my son I looked for a spot to sit. A chair had to be removed and the usher that removed the chair treated me as though I had no brain. He spoke to me like a child. By the time the ceremony started I was ready to punch someone in the nose. Equal I was not.

Example 2: I was at a baseball game with a friend's 12 year old child. Yes, the new stadium is accessible and has a host of seats for me to choose from. Why I can even got to the bathroom. I was hyper alert with this kid as I was the responsible adult looking after her. All went well until we tried to leave via the elevator. One elevator was blocked off for VIP ticket holders. The line for the other elevator was very long and I would estimate 20 people cut in front of us. I politely complained to a nearby usher and he told me "oh, that happens all the time. You people are good at waiting so just be patient. There is nothing I can do to help you". Again, equal I am not.

Equality in the examples above is not remotely a consideration much less a concept others have accepted. Yes, I can get into buildings, attend a baseball game and graduation, but that does not mean in any way I am equal. Imagine what would have happened at my son's graduation or at the elevator if I replaced the word handicap with black. Imagine the outrage if I were segregated to a "black elevator" or the presence of a "black man" was yelled from one car attendant to another. It would have been socially unacceptable at least and for most with any sense of equality a major civil rights violation. But I am not black. I am just your average middle aged crippled dude whose presence is tolerated but humanity and equality denied. When I wonder is this going to change? Harkin's words are not going to help the present lack of social equality. Indeed, I think the little coverage the 20th anniversary of the ADA will garner in the mainstream media is going to be counter productive. We people in the disability rights movement have a long way to go until we are truly equal. And that my friend is what we should be focusing on.

New Age Retailers

Consumers are more net savvier than ever before and are looking for discounts, promotional codes, coupons before making their purchase decisions. According to Google Retail, search for promo codes increased by 55% YOY compared to 2009. Below are some of the retailers who are taking advantage of this new trend.

1. http://www.slickdeals.net/ - This site helps users upload the best offers in town and thereby help each other. It helps consumers share knowledge on the deals and thereby help them in making better shopping deals
2. http://www.retailmenot.com/ - Lists information on the top coupons of the day. The site is pretty global with coupons listed from US, UK, Germany, Canada, India, Australia, France & Netherlands.
3. http://www.groupon.com/ - The site lists one great deal everyday. Retailers are benefited by having new customers, and customers are benefited by a good deal. The company works behind the scenes to ensure that the product advertised is good enough for consumers and it helps the retailers by ensuring that they have a minimum number of customers who can take advantage of the deal
4. http://www.woot.com/ - Similar to Groupon, whereas Groupon works at a local city level, woot is national.
5. http://www.pricewatch.com/ & http://www.pricegrabber.com/ - This site helps users compare prices and watch for good sales or discounts. Based on user criteria, this site gets the deals for those specifications. This is called online comparison shopping.
6. http://www.swoopo.com/ - Auction site but very similar to a lottery system but with a lot of user interaction that makes bidding interesting and keeps us on our toes. Beware you might be addicted.
7. http://www.bigdeal.com/ - A Bidding site, where customers bid for new electronic items, site similar to Swoopo
8. http://www.gilt.com/ - Invitation only site but anybody can get themselves invited. For people (men, woman and childrent) who are fashion conscious and want good bargains, this is the site to go.
9. http://www.retrevo.com/ - This is a site for electronic lovers. This is what the company has to say about the site �Retrevo uses artificial intelligence to analyze and visually summarize more than 50 million real-time data points from across the web to give shoppers the most comprehensive, unbiased, up-to-date product information they need to make smart, confident decisions about what to buy, when to buy, and where to buy.� But the biggest takeaway from this site is that we can determine the best value for us (in terms of specifications) for a given price range.
10. http://www.cowboom.com/ - A Best Buy company site, good deals for electronics goods, especially the daily deals.

If you guys come across any other interesting sites, please let me know.

Another site which has come to notice is

11. http://www.couponchief.com/ - The site is similar to retailmenot.com but one distinctive feature of this site is that it pays consumers to share links to coupons. Now who wouldn't like this. Also, liked their blog section, where it has posted deals for not so common retailers like Kaplan, Hobby Lobby, etc.

Re-visiting Mumbles Pier

Last weekend an exhibition was held by Amecco, owners of the Mumbles pier, detailing plans of a re-development, including a new hotel, apartments, leisure and family entertainment centre, and a new modern lifeboat house. From this proposed �39 million development the owners hope to raise the �3 million needed to restore the Victorian Pier, which is in its 112th year and needs a considerable amount of repair (see

http://news.bbc.co.uk/1/hi/wales/south_west_wales/10332703.stm and http://www.thisissouthwales.co.uk/swansea/Exhibition-viewers-praise-pier-plans/article-2359480-detail/article.html).

  Mumbles Pier and Pavilion, 2010

Amecco (or Amusement Equipment Company Limited) have been involved with the running of the pier for over 60 years, from 1938 as sub-lessees from the South Wales Transport Company, then as owners from 1971. The records of the South Wales Transport Company Limited include documents concerning the history of the pier, from the original plans approved by the Board of Trade, to its sale to Amecco.

In 1889, an Act of Parliament was obtained incorporating the Mumbles Railway and Pier Company, who built an extension of Mumbles Railway to Mumbles Head, and a new deep water pier. The new line and pier opened on 10 May 1898. In 1899 both Mumbles Railway and the Pier were leased to Swansea Improvements and Tramways Company. This lease was later transferred to the South Wales Transport Company, who sub-leased the pier to Amecco. In 1959 the South Wales Transport Company purchased the pier, hotel and railway from the original owners Swansea and Mumbles Railways Limited and Mumbles Railway and Pier Company. While the railway was soon after abandoned, South Wales Transport allowed Amecco to continue their lease of the pier, before they eventually purchased it.

The collection shows that today is not the only time that the Pier has been in need of repair. In 1952 it was closed and declared unsafe. Files kept by the company�s secretary include reports on the negotiations between the lessees and sub-lessees for the repair and plans of the proposed new jetty. There is also a folder of plans and correspondence with the Royal National Lifeboat Institution concerning a new lifeboat station and an extension to the slipway in the 1920s, and the establishment of an inshore lifeboat station in the 1960s.

There are a large number of deeds from the Swansea Improvements and Tramways Company in the collection, including some agreements for facilities and amusements for the pier in the 1900s. These include agreements with a Pierriot troop (they would appear every day except Sundays), a company supplying a Mutoscope Machine (an early motion picture device), a company supplying a confectionary machine, the lessees of a photographer's shop and a fancy dealer's shop.

One of the attractions at the Pier was the Pier Hotel, which included a dance hall. Papers concerning a dispute over the lease of the hotel in the 1940s show how the hotel was enjoyed by people during the Second World War. Officials of the South Wales Transport Company described how goodwill and increased business was brought about by the war, with more troops in the area, a greater safety from bombing in Mumbles over Swansea and travelling restrictions meaning that more people are taking local holidays. Drafts of proofs of evidence from inspectors on the railway explain that during the war dances were held every night except Sunday, with one of the inspectors stating that people seem to have �gone crazy on dancing, drinking and any form of amusement during the war�. The visitors to the war time dances were mainly American troops, a large number of merchant seamen of all nationalities, some British troops and munitions workers.

These papers also show the inherent link between the railway and the pier, with one inspector estimating that 90% of people attending the dances would travel there and back on the railway. The trains ran every 16 minutes, and sometimes the driver was unable to stop until Oystermouth because the carriages were so full. With this in mind, it would be interesting to see if there has been, or will be, any talk of proposals to bring back the Mumbles Railway, to complement the planned rejuvenation of the pier.

We are Working Hard: Reality is Different

If there is one thing I do not have the patience for it is what I call being stroked. People with a disability will know what I am referring to. You arrive at a building and access is limited and there is no accessible bathroom. You find out who is responsible for making the facility accessible and are told the problem is being worked on. This person assures you with great sincerity that access is very important. You are told that "they are working hard on the problem". Fast forward two years, three years or five years later and the problem is still being worked on. Yes, they are working very hard--they are working very hard to con people with a disability and lead you to believe access is a priority. If you believe any person that tells you they are "working hard" on the issue of access than I have a bridge for sale in Brooklyn. What they want is for your crippled ass to go away and never come back. You my friend are not a priority. If you were access issues would be resolved promptly.

The above thoughts came to me as I read an article about how captions are coming--slowly--to internet sites. Closed captioning is mandatory on television but not for programing on the internet. Thus I thought of the actress Marlee Matlin. A truly beautiful woman who two years ago made a short lived splash as a deaf person on the show Dancing with the Stars. Viewers were amazed a deaf person could dance. How inspiring! Spare me! At the time Matlin appeared on the show she was assured that ABC was working hard on the problem of captioning. Fast forward two years later and ABC.com is still working on the problem of captioning on the internet. Two years. In terms of internet technology two years is an eternity. Anyone who purchases a computer knows the machine they purchase is obsolete within months and two years for some is the expected life expectancy of a machine. So, why is ABC still working hard on the problem? The answer is simple: captioning is not a priority. ABC does not care. If I have learned one thing after thirty years of using a wheelchair it is that social and architectural change only comes with a fight. ABC and popular websites such as Hulu, You Tube, Netflix among many others have failed to value captioning. It should be included as part of every single video posted on line. I do not think this is an unreasonable expectation. Every new building constructed is supposed to be accessible. Why not make every new video posted starting tomorrow have captioning. I can just hear the howls of protest. I am being unreasonable. My request, not the word here, request, is impossible to achieve immediately. I am told we need time to work on the problem of captioning. Exactly how much time does ABC need and who is working on the problem? How many hours are spent per day and how many individual have been assigned to the task? Answers to these questions will never be revealed because they would demonstrate the time and energy spent on the problem are negligible. This is infuriating. I would rather be told the truth than lied to and mislead. But lies are the norm as are misleading statements. Hence when I am told someone is working on the problem of access I translate this to mean two things: first, I should go away and never come back; second, no one is really working on the problem. The only way to change this cultural response, that is force people not to blow you off with false promises is to fight--make a stink, threaten a law suit, garner bad publicity etc. Being patient does not work. Exceptions do exist but they are rare and noteworthy. The norm is resistance. Afterall, do you really believe it takes ABC more than two years to solve the problem of captioning?

Education and Disability: Barriers, Barriers, and More Barriers

Over the weekend I read a long article that was accompanied by a slide show in the New York Times education section. The article, "A Struggle to Educate the Severely Disabled" by Sharon Otterman left me somewhat angry and deeply annoyed. When I calmed down I was not angry or annoyed but depressed. Profoundly depressed. The focus of the story was characterized by a unrelenting negativity. Nothing positive was mentioned about the life and education of students with what are characterized as "multiple disabilities". This term is a veritable garbage can used to classify a small fraction of students. The article makes it clear these students are costly and not well served by our current educational system. The reasons for this failure are complex and hinted at only in passing. Instead, the article questions the value of educating students with multiple disabilities and despite its length comes across quite superficial. What does resonate are multiple negative comments or assessments that could easily lead some to conclude a great deal of money is being wasted on students with multiple disabilities. For instance, one student, Donovan Forde, is discussed throughout the article and used by the author to hook the reader in. According to Otterman,

"After 15 years in the New York City school system, he is less reserved and more social, but otherwise has shown almost no progress".
"On standardized assessments he has trouble with tasks most children master in infancy"
"Educating Donovan remains a search for ways to reach him":
"Donovan's communications are hard to measure on assessments".
"One morning in mid-March, there was an accomplishment".
Ms. Mack who worked with Donovan for two years stated "I don't think he appreciates getting an education".

Based on the many comments posted by the New York Times educating students like Donovan is a waste of time, energy and siphons funds from "normal students". Such remarks I consider bigoted at worst or poorly chosen at best dominate the comments section and are as striking as the overwhelming negative tone of the article. The subtext clearly questions if students with multiple disabilities are worth educating. This is based on the premise that a valuable education, one worth funding, is to produce independent autonomous people capable of making a contribution to society---that is becoming employed. If this is not possible then the value of the education received is open to debate. Given this philosophical underpinning, Otterman is free to characterize students with multiple disabilities in the worst possible light. I will refrain from citing the most objectionable or unnecessary statements that dehumanized students. Instead I will focus on the more subtle comments. For example:

"Aides lift another student, Darius Jenkins, 15, out of his wheelchair and place him on an inclined plane, where he lies quivering and drooling slightly for most of the class. He is given a squeeze ball to hold several times, but each time, he drops it". I am sure the description is accurate but its tone objectionable. What if I described a so called "normal child" in first grade as follows: "Mary is constantly distracted. She cannot recognize her letters or read a single word. She picks her nose instead of following the book being read in class". If I were a parent I would not be happy with either of the above assessments.

What is very clear is that to educate students with multiple disabilities is very expensive--"they are the most costly to educate and least understood". According to Otterman "in 2009 the cost per student was $58,877, more than triple the citywide average of $17,696". Nationwide there are apparently 132,000 students with multiple disabilities out of the 6.5 million receiving some sort of "special education"at a cost of $74 billion a year. Much money is being spent but is it being spent widely? Here is where I agree with Otterman that the educational system for students with multiple disabilities is flawed. The system we have in place is failing students like Donovan mentioned above. IDEA, Individual with Disabilities Education Act, is part of the problem--it is not well suited for students with multiple disabilities. These students it seems to me thrive when given experiential and sensorial stimulation. The academic component of their education, though important, needs to be considered in a broader context. It is hard for any person to learn if they are physically uncomfortable and tense. Hence physical, occupational, and speech therapy are critically important as is adaptive physical education and recreation. The goals of educating students with multiple disabilities also needs to be reconsidered. Independence may not be possible but that does not mean an education lacks value or importance. This is where the real problem lies--educating students like Donovan is not valued. What is the point many wonder? Why spend so much money on a student with such limited communication?

The answer to the above question is glossed over as is its importance. Since 1975 all children in America are guaranteed a free public education. That is all children, those with and without a disability, have the right to an education. Let me put this in perspective. If I became disabled three years earlier than I did the public school I attended would have had the legal right to bar me from receiving an education. Thus I consider myself lucky. I was among the first Americans with a disability to be educated and escape institutional life. Sadly, this is exactly what happened to hundreds of thousands of people with a disability and an untold number of lives were destroyed. People with disabilities were shipped off to institutions with the encouragement of doctors, social workers, educators, priests, rabbis, and other professionals. It was thought to be the right thing to do. While not all institutions were like the notorious Willowbrook, institutional life should be perceived as a measure of last resort. Many other viable alternatives should exist--here I refer to group homes, day programs, and other residential adaptations. Today parents are often forced to institutionalize their children--people like Donovan.

Perhaps the skeptic reading this post is thinking I am confusing two different populations: those students with a cognitive disability as opposed to a physical disability. I see no difference culturally. The opposition I have encountered in my efforts to receive an education were significant. The only reason ramps and elevators are supposed to be the norm today is because disability advocates fought for them with vigor. Laws were passed and educational institutions begrudgingly provided access. Problems still abound decades later. As a father instead of student I would characterize my son's public school as hostile to students with a disability and my crippled existence. I have precious few allies and most parents, given tight budgets, would happily choose to do away with special education so more money can be spent on their "normal" children. This is an old story that is played out in my son's school as well as in Donovan's school. The people that spend the vast majority of time with students with disabilities are not so called "special eduction teachers but teacher aides. Aides come and go, receive no training and are among the lowest paid people in the school system. No wonder students with multiple disabilities do not receive more therapy--those employees earn to much.

Otterman wrote just one thing that struck a positive chord with me-"students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classes, addressing a core concern in the field--that too many children are not getting access to the regular curriculum". This begs the question of what happens to students that will not benefit from the "regular curriculum"? As already stated, I believe their presence is not wanted, their education flawed, and worst of all not valued. Such students are capable of learning and have the right to learn. Much depends upon how we define and perceive education. I can offer no ready solutions to the issues and problems I have addressed. However, I would suggest how we educate those students with multiple disabilities speaks volumes about who we are as people. Historically and to date we have as Americans have done an abysmal job in this endeavor. I know this for a fact and I suspect people like Donovan are aware of this at some level too.

Ocado

Ocado lists only those items that are bought monthly ( childrens stuff, horlicks, rice) that people wouldn�t think of cutting back, preferably high value and high margin items.
The idea is to negotiate directly with the manufacturer and pass on the benefits to consumers.

Click here to access Ocado

Disasters: Sorry But You Are Not Important

In the event of a a disaster people with a disability are screwed. This is a harsh fact of life. I think about this every time I fly on a plane. I know the odds of surviving a plane crash are remote at best. I know my odds are far longer than most people I fly with. I would need help getting off any plane that crashed and I have no doubt when faced with a life and death situation precious few people will stick around to help me. This includes the flight attendants whose job description theoretically includes helping me. I live with the knowledge that in event of a disaster no help with be forthcoming. I do not let this knowledge prevent me from getting on a plane or other means of mass transportation. What does bother me is that our government makes no pretense that is will help people with a disability in the event of a disaster. Disaster studies make for scary reading--truly troubling if you have a disability. We people with a disability are the very bottom of the priority list. We will be the last, and I mean the very last, people saved. Shoot, pets have a better chance at survival and rescue.

This week the Federal Emergency Management Agency (FEMA) acknowledged what I already know--it cannot be expected to save people with a disability in the event of a natural disaster. Why is this the case? Marcie Roth, FEMA's senior advisor on disability issues says there is a lack of funds to do so. FEMA does have a plan in place though to evacuate, shelter, and supply people with a disability in case of a natural disaster. And who is in charge of this plan and what is the budget? One person is in charge and the budget is $150,00. So FEMA has a plan in theory and no ability to implement it. I feel so much safer! Of course, FEMA is also the government organization that in 2005 during Hurricane Katrina took three days to get water to the Superdome. Hence, my expectations, low to begin with, are really non existent now. The House Committee on Home Land security suggested FEMA create a registry--FEMA rejected this idea because it would give people with a disability a false sense of security. I translate this to mean no help with ever be forthcoming. No wonder I think my life has less value than others that can walk. FEMA has acknowledged this as have most disaster planners. My point is the next time people cluck about how we Americans are equal I suggest readers with a disability bring up disasters plan. They are proof positive our own government does not value our existence and lives. This is a fact of life I live with and don't like. It is not that I worry about disasters but rather the larger meaning of such plans and how they filter down into every day life.

Home Depot: A Missed Opportunity

I hate super stores. They are truly miserable places to shop. Customer service is non existent despite what the ads on television portray. When I go to stores such as Staples, Home Depot, Target etc. I have no expectations except cheap prices. However, I pay dearly for those lower prices. For me, I pay via ignorance, stunning stupidity, and often shockingly rude comments and questions. It is not just the customers that are the problem--employees are equally unaware. Yesterday, I was in the Home Depot and had a typically negative encounter. When I shop at the Home Depot I go during the week at an odd time. More often than not the store is devoid of customers and employees. Yesterday was typical. Aisle after aisle was empty and the store looked like a ghost town. All was well with the world until I encountered an employee I could not void. As I was passing her in a loud voice she stated "Hey, no speeding in the store. The speed limit is enforced". I stared at the woman with a face of stone. No comment was necessary. Oblivious, she cackled at her own joke clearly amused at my expense. What I did next bothers me--I did nothing. I kept on going and simply let my anger stew. In retrospect I should have stopped this employee and told her exactly how rude she was. I should have gone to customer service and complained. Her "joke" was not funny or remotely appropriate. I permitted myself to be the butt of this employee's joke. I felt less than human, reduced to an inanimate object told not to speed. I was not amused and have heard this so called joke about speeding more times than I care to remember. The joke tellers think they are hysterical. They are not funny at all. They are rude and thoughtless. This is a problem. How do I explain this so called joke is not funny? How do I tell them that I am deeply insulted and angry? How do I get them to acknowledge that I a human being?

I do not have any ready answers to the questions above. I wish I did. When I let such social violations pass without comment I feel like I missed an opportunity to educate and correct. Ignorance afterall can be cured by a little education. But why I wonder is such an educational effort left to me and other people with a disability. It is not our job to educate the masses about disability. Surely disability awareness is part of the secondary school curriculum or employee training. If this true, why does ignorance abound? Frankly, I am getting too old and way too cranky to tolerate ignorant comments. I try not to be confrontational but there are times I cannot or should not let comments go. Yesterday's speeding "joke" was one of those times I needed to stop and be confrontational. Aside from the ignorance of the question, the laughter at my expense hurt. Sadly, such comments are far from unusual. I have been subjected to rude comments from strangers for the last thirty years. These comments have not abated--they are uttered with stunning regularity. I have adapted by creating some pretty sharp if not devastating replies that shut people up fast. This makes me feel better but I am not sure how helpful this is. I suspect my cutting replies are quickly dismissed; I am perceived to be the "angry" disabled person that hates his lot in life, an antiquated stereotype. My other means of adapting is less than helpful--I have learned to avoid certain social situations. I never ever go to health food stores--an offer for a cure to paralysis via herbal remedy is common. I never go to church--someone will tell me if I pray hard enough I will be able to walk again. In the end, what I resent the most is being public property, having my humanity violated on a regular basis. I just do not understand why others, all other humans, don't get this.

Adaptation and Enhancement

FIXED (Trailer) from Regan Brashear on Vimeo.

The trailer for Fixed has put my brain in over drive the last few days. I am torn about the very idea of being fixed and title of the film. I do not think my body needs to be fixed. Let me be emphatic: I am quite happy with my body the way it is. I have no interest in stem cell research or a cure for paralysis. This does not mean I like being paralyzed. But paralysis is a fact of life for me and will not change. However, I can change society and the cultural response to paralysis and disability in general--this is why I write about and study disability. I want to make a concrete contribution to the lives of those with a disability. This effort is an uphill and often thankless battle. Disability is perceived to be a problem by many people and institutions. The medical establishment in particular views disability as the ultimate symbolic failure and seeks out cures no matter how impractical. I am not opposed to pure research but rather deal with the here and now. And right now I am wondering why disability in the broadest sense of the term yields so many stupid and needless inventions. I see silly and impractical inventions hailed all the time and can only shake my head in wonder. For example, a few months back I read about an exo-skeleton that enables a paraplegic to walk. This exo-skeleton may have a cool factor but is totally impractical. A wheelchair is a far superior technological device that is not only empowering but liberating. Yet no one thinks a wheelchair is cool. A wheelchair is bad, the ultimate symbol of disability and dependence. This is why the notion of being "fixed", the title of the trailer and film is so misleading. It ties directly into negative assumptions about disability. I deeply resent the popular cultural assumptions about disability because they are misguided and wrong. I do not see anything wrong with disability. Instead I see great beauty in disability--it brings out the best in the human spirit and our ability to adapt. And if we humans have proved anything we are very good at adapting--we have been doing it for millions of years. If you doubt me I suggest you read the work of Charles Darwin.

Why do I see beauty in disability? It has nothing, and I mean nil, about "overcoming" a disability or being "inspiring" to others. Such notions are demeaning and destructive. I find the way people adapt to their disabled bodies fascinating. One must discard all you have been taught and think in a radically different way. You must do this daily. This can entail something as mundane as how to navigate a street or get from the ground back into a wheelchair. The environment we people with a disability must navigate is hostile both practically and socially. Architectural barriers remain common place and discrimination is rampant. Thus we learn to adapt. This does not mean I am opposed to pure research for cures to a host of disabling conditions. I am also not opposed to human enhancement and technology. But my idea of enhancement does not often jive with people in the field. Enhancement in my estimation is too often rooted in a medical or profit model of disability. What people fail to realize is the beauty of disability and how it enhances our life. In the words of the artist Reva Lehrer: "In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions. There is a great deal of creativity in disability if you decide that "reality" is just a raw material for you to mould. So many times, these re-inventions have been the keys to open new doors for everyone."

The new doors Lehrer describes can take many different forms. These forms do not include sitting around hoping, praying or supporting a cure to paralysis. These doors do not include any technology that is an impractical attempt to mitigate disability, to make others feel more comfortable with the disabled body. Don't misunderstand the point I am trying to make. I support all efforts to enhance the quality of life of people with a disability. At issue is how is that life perceived. For instance, I keep up with the latest technological gadgets and advancements in the wheelchair, bike, and ski industry. I rapidly incorporate those advances into my life. None of this involves a desire to walk, to fit in and make my disability disappear. In my case, paralysis is part of who I am as a human being--it is an integral part of my identity. I see nothing wrong with my body. This viewpoint is radically different from what people in human enhancement think. They see the body as a platform to incorporate and improve the human body. Well, this works in some case but not all. For instance, I laud the advances in prosthetic technology. Such advances improve the quality of life for amputees. But I do question where and why such advances have been made. The fact amputation is one of the "signature" wounds of the Iraq war cannot be ignored. It is undoubtedly a factor in the evolution and advancement of such technology. At the other end of the spectrum we have the Ashley Treatment and growth attenuation. I consider this ethically unacceptable. It is a medical solution to a social problem, one that could be solved if we as a society provided the appropriate support services for those with cognitive and physical disabilities. Hence I find the words of people like George Devorsky who supported the Ashley Treatment disturbing at best.

As to the film Fixed that prompted me to write, I have great hopes it will be well done. The scene with John Hockenberry and his family is wonderful. I loved his book Moving Violations and have found his subsequent comments about disability thought provoking. I am usually in agreement with what Hockenberry has to say about disability. Interestingly, he has played with the idea of how to make disability cool. He has put lights on his wheelchair, painted it different colors and listened to some smart people--his children. I too listen to kids as they have no preconceived ideas about disability. This makes me wish we could put children in charger of the durable medical goods industry that has a penchant for treating its customers like dirt, making over priced and inferior products, and stifling innovation. Why is this this attitude common? It gets back to what I have been writing about since I began this blog--valuing the life of those that live with a disability. We are afterall creative people that exemplify human adaptability.

Anger: Political and Crippled

There is a fascinating article in the Washington Post dated June 9. The article by Dana Milbank, "Nancy Pelosi, the Liberal House Speaker, is Heckled by Liberals", is a mixture of astute political observation, rhetoric and ignorance in terms of disability issues. Those that follow disability rights will know I am referring to an ADAPT protest that briefly made the news early this week. ADPAT hit the news because they loudly heckled Nancy Pelosi. The news coverage was superficial at best--filler on a slow news day. In contrast, Milbank's article struck a chord with me. In her estimation, the ADPAT protest was the culmination of 17 months of anger that has been building against Obama. Who is angry with Obama? Why liberals of course who have collectively decided to "eat their own", specifically the "celebrated San Francisco liberal" Nancy Pelosi. Who are the angriest group of liberals? Yes, we crippled people are angry, very angry. In fact we are filled with rage! That's right the ADPAT protest was not about reason or politics but rage. A "wheelchair-bound woman named Carrie James" is singled out as your archetypical angry cripple. James screamed from her table with 15 other people "Our homes, not nursing homes". The protesters all wore orange t-shirts that proclaimed the "Community Choice Act Now" and had the audacity to unfurl bed sheet banners. In response Pelosi's body guards rushed forward and formed a protective ring around her. Pelosi refused to stop her speech and for "an excruciating half-hour. The hecklers screamed themselves hoarse, dominating Pelosi's speech through her concluding lines".

According to Milbank, some political movements unravel gradually but the ADAPT protest was proof positive that "Obama's hope-and-change left has faded" while conservative political movements such as the Tea Party are gaining popularity. I have no idea if Milbank's assessment is correct. If I am any indication, she may be right. I am disillusioned with Obama penchant to compromise, compromise and compromise some more characterized by some as "split the baby politics". Regardless, what fascinated me about Milbank's article was the way the ADAPT protesters were described and the reaction to their protest. ADAPT is angry, protesters filled with rage, absent of reason. They could not be reasoned with. Some audience members tried to get ADAPT to quiet down--an effort that only "worsened the disturbance". Apparently this caused James, the "wheelchair-bound" woman to shout louder because "the stakes are a little high". James is described as "pumping her fists into the air, she chanted "Hey, hey, ho, ho nursing homes have got to go!". The conference organizer, Robert Borosage, "shaking his head and licking his lips, tried to shoo the wheelchairs away from the podium". Clearly, ADPAT was an unwanted presence.

Missing from Milbank's article, aside from any semblance of political balance, is a basic understanding of ADAPT or why they are protesting. Pelosi, like Obama (I think), supports the Community Choice Act. Readers know this act will increase access to community services for people with disabilities designed to allow them to live at home thereby ending the institutional bias toward nursing home care. The CCA is legislation that is "long-languishing". Are some members of ADAPT angry? You bet they are. And I would quickly add they have every right to be angry. Obama and Pelosi support the CCA in name only. Hell will freeze over before they forcefully push this much needed legislation forward. This bothers me but what bothers me is more is the stereotype Milbank seemed to rely on. Here I refer to the notion that all people with a disability are angry. In the olden days this was referred to as a "cripple's disposition". What is over looked is why people with a disability are mad. The popular misconception is that we crippled people are mad because we have a disability, some sort of horrible physical deficit. This could not be farther from the truth. The reality is anger, crippled anger, stems from just one thing--social injustice. Social injustice takes many forms foremost among them blatant discrimination. Ad in a dose of stigma, economic deprivation, a stunningly high unemployment rate, and barriers to education and I maintain crippled people have every right to be angry. However, this is not discussed much less acknowledged. 20 years after the passage of the ADA American society has continued to categorically refuse to negotiate or accommodate our difference. This refusal is worthy of detailed discussion. As James pointed out the stakes are high and lives are at stake. Many have already died and countless others have suffered. Am I being melodramatic? In a word, no. If you doubt me go for a drive this summer. The odds are good that at some point you will pass a shuttered institution that dots the American landscape. Once upon a time thousands of people with disabilities were ware-housed in such places, led a compromised life, barred from society. We no longer institutionalize people with a disability but that does not mean we are equal. If that were the case we would not lead civil rights legislation like the ADA. More personally if people with a disability were equal I would not feel estranged from society. In part this is why I am angry, an anger that is well placed and misunderstood.

Conjoined Twins, Disabilty and Ethics

Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger's book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger's book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics. Dreger's work successfully changed the archetypical story associated with conjoined twins and others with extraordinary human anatomies. She highlighted that the stories often told about people with unusual bodies involves changing that body to fit the social context. This led me to an "ah ha moment" that is all too rare in academics. The story of conjoined twins reveals a history of people who are comfortable with their own bodies. The problem is not with the unusual or disabled body but rather with society. Individuals have rights, human rights, and those rights for those who do not fit into a broad spectrum of normal are violated regularly. I know all too much about this as do others with a disability.

Dreger made me believe change is possible. For instance. she points out that progress made in treating those born with intersex conditions since the 1990s. While this is encouraging, I remain dismayed by the cultural perception of disability and how it seems impervious to significant change. Hence I thought of the Ashley Treatment--a child whose body was radically altered to fit society and its failure to accommodate people with profound cognitive and physical disabilities. I thought of the ADA and how twenty years after its passage access for all people with a disabilities remains a constant battle. I thought of ethicists in medicine who have a penchant for justifying treatments that are at best questionable or worse violate the bodily integrity of the most vulnerable among us. I thought of disability scholars who have largely failed to enhance the civil rights of people with a disability. I thought of disability activist that in spite of great effort are virtually invisible in mainstream news stories. I thought of people at risk--specifically the newborn, elderly, and those with a disability. These are hard times for such people, fearful times I would contend. In the words of Dreger: "In the United States, the values of individualism, self-improvement, free enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed, even expected--to employ medical technologies to alter one's anatomy and make it more socially advantageous".

Dreger's words were echoing in my brain when I read about Brianna Manns. Manns gave birth to conjoined twin boys on March 31, 2010. The boys cannot be separated because they share a single heart and have complicated anatomy. At issue is how much medical intervention is appropriate. Doctors have been clear they do want to see the twin boys suffer. Their mother, Brianna Manns, wants every effort to be made to extend the life of her children. According to Helen Kusi, a neonatalogist, "we empathize with her but as health care providers, knowing what we know, we don't want to see the babies die in an agonizing way. That's where we are not on the same page with her. We haven't given up, but we have to face reality". What prompted this statement was the refusal of the mother to sign a do not resuscitate order. Here we have a collision between two opposing world views. It is my understanding that the mother is deeply religious and thinks there is a reason God made special babies such as those she gave birth to. While I do not know any more than what I read in the news and on line it appears that Manns has been at odds with doctors for sometime. Doctors discussed terminating the pregnancy but Manns refused to do so. Doctors then maintained the twins were not likely to survive birth. Survive they did and Manns and the doctors charged with the care of her children remain at odds.

The above is an extreme case, one that will likely lead to great emotional angst for the mother and health care providers. I am sure medical ethicists will weigh in on what transpires as will many others. I sincerely hope not only have those involved read Dreger's work but have called her in to lend her expertise. To me, this case is but a sign of troubled times for those that do not conform to societal and medical norms. It is my belief that as our economy continues to falter and health care dollars are watched like a hawk all those that do not fit in will be perceived as a problem--an expensive problem that we can ill afford. Hence the media reports about how expensive it is to care for the elderly as they approach the end of their life or how much it costs to keep a person alive per day that is dependent upon a respirator. At no point do we read about the contributions the elderly make to society nor a word about the person that not only survives but thrives using a respirator. What is conveniently ignored are the social barriers to education, personal relationships, and community involvement. Instead, we create institutions to house and separate the unwanted or in the case above convince ourselves we do not want babies to suffer. The fact is society simply refuses to accommodate some bodies. I know all about this as my body is lacking socially and physically--I cannot walk, that is not in question. But my inability to walk should not preclude me from being an accepted member of society. Yet, my very existence in the estimation of many is an odious burden. I have been told point blank by utter strangers that they would "rather be dead than use a wheelchair". How I wonder can one think that something as insignificant as the inability to walk makes me so inferior, not worthy of life itself. I may have a physical deficit but that does not make me inferior to others. Thus I have no interest in changing my body to conform to what others expect. I need not be saved by science or technology but rather expect, demand really, that society accept me for the man I am. Afterall, I am as human as is any person with or without a disability.

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.

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.