New Product - Steamer Industries Anglesets

Here they are, the inclusive Steamer Industries first ever angle reducer cups, these cups come with a 2 degree offset. Really happy with how these turned out..

Should be selling for around the �70 mark.. contact me if intrested in a set.

A Night with Steamer Industries- How its made..

More Mountain Biking Videos


Just a big of an insight into how I make my products and the environment I work in..


Cheers to David Quinlan for making the video - visit his own blog here - http://classyas.wordpress.com

End of Life Discussions

My email led me to read two connected but very different responses to an impossible conundrum. Here I refer to the increasing probability if not certainty that in the near future it will be possible to test people for Alzheimer's Disease before symptoms of dementia have developed. That is people who are clear and lucid will be told that they are going to develop dementia. The progress of Alzheimer's can be slowed with medication but no cure exists. What then is the point of the new test to predict Alzheimer's? According to researchers and clinicians early detection could help patients and their families to prepare for the future. What exactly do these plans entail? To me the obvious reaction is simple--many would choose not to live. This scares me--it truly has me worried. The implications to vulnerable populations, meaning the elderly and disabled, are potentially dangerous.

According to an article in Time, "As Tests to Predict Alzheimer's Emerge, So May Debates Over Right to Die", by Eric Parens and Josephine Johnston, both scholars at the Hastings Center note:

"None of us can know what sort of slippery slope that request [to die] might put our society on; one day we're giving assistance in dying to Alzheimer's sufferers, the next we're doing the same for people who are depressed or disabled or poor or just old. It is vitally important for us to explore all the reasons against allowing or assisting Alzheimer's patients to end their lives. And it is equally important to begin to explore the reasons on the other side. It is time to listen to and take seriously those people who, upon seeing their own parents spend years, even decades, suffering with Alzheimer's, say that they refuse to expose their partner or children to the same. We cannot ignore competent people who say they would rather die than no longer recognize their children or the partner with whom they built a life. Nor should we dismiss those who say that they can't themselves afford to pay for years of nursing home care, don't want their children saddled with that expense, or would rather the money be used for their grandchildren's education".

The discussion Parens and Johnston want to see begin has not taken place in the United States. I agree a discussion must take place--the sooner the better. However, unlike Parens and Johnston I am wary of such a debate. I am convinced how it will end before it has started--out of the goodness of our souls and with great compassion we will end the lives of those with Alzheimer's. Alzheimer's is a devastating disease that strikes fear into the hearts of those it will affect as well as their families. Alzheimer's destroys what we American's value the most-cognition and personal autonomy. Self determination is slowly and inevitably lost to an individual. It is for most the worst case scenario for the end of life. How we will respond to a discussion is a forgone conclusion in my mind. I am not just in a dark mood. For on the same day I read the Time article by Parens and Johnston I also read a blog post by Stephen Drake of Not Dead Yet. Entitled, "Netherlands: One-third of Doctors Willing to Euthanize Patients with Early Dementia", I was not the least bit surprised that one-third of doctors were willing to end the life of those suffering from early dementia associated with Alzheimer's. Yes, one in three doctors would end the life of a person with dementia. 33% of doctors would end the life of a person with dementia. Think about this statistic. What sort of debate are we really about to enter in here in the USA? I would suggest it is not a debate but rather the search for the justification to end the life of people with dementia. The Dutch have already made such a decision described by the press as a "minority" of doctors are willing to help patients die. This statement is correct. However, it still leaves one in three doctors willing to kill their patient. I do not like these odds--indeed, these odds scare me to the very core.

To me, we are about to start asking all the wrong questions. Instead of wondering if we should be allowing people with Alzheimer's to die I would posit we should be asking how can we empower such people. How can we insure families receive appropriate support, how can we insure families do not incur great debt caring for a loved one. What can people who have Alzheimer's teach us about life? I may appear naive in positing these observations. However, I am not naive. I saw my father experience dementia at the end of his life. It broke my heart and was devastating but at no point did I wish he or his doctors would prematurely end his life. In looking back on those hard days I am intensely gratified for what I was able to do for him. He and my mother cared for me when I was a morbidly sick child and in a very small way I was able to reciprocate their efforts.

Life is not easy nor are end of life issues. I am perplexed why we do not have a vibrant hospice movement in the USA. Simply put we do not often get to choose the way we die. When we start making these sorts of decisions for others as Parens and Johnston pointed out we are potentially on our way to a slippery slope. I know a good bit about this concern as I have seen that slippery slope first hand. I am old enough now to comment on the history of medical care and how our social perceptions dictate care. For example, in the late 1970s surviving a high level spinal cord injury was highly unusual. During my rehabilitation I did not see any quadriplegics--certainly no respirator dependent quadriplegics. I never even heard of anyone surviving such an injury. As I have written before people with high level spinal cord injuries were perceived to have no quality of life. Doctors decided to let nature take its course. That is these men and women were allowed to die. The first quadriplegic I met in college had a C-8 level of injury. One night when he told me "one more inch and I would be dead". Back then you see C-8 was an unwritten cut off mark for survival. This leads me to ask what will become the unofficial cut off mark for survival with Alzheimer's? When and under what circumstances do we decide life is not worth living? Again, this scares me, truly frightens me. You see about once a year some stranger will come up to me and without prompting state "I would rather be dead than use a wheelchair'.

Let us be very clear about the so called debate we are going to enter into. The decision has already been made before we even start the discussion. The variables up for debate with regard to Alzheimer's touch upon what we American's value the most--autonomy. Autonomy however is fluid and ever changing. None of us are ever autonomous beings. We are all in some ways dependent upon others. This dependence could be a job or family. But autonomous beings we are not. So let's no kid ourselves. The Dutch have proved in advance that about on third of doctors have no qualms about killing people with Alzheimer's type dementia. I see no reason to think Americans doctors will be any different. If this does not scare you I will be scared for you.

Bitter Truth and Gritty Reality

A friend sent me a link to an article in the Huffington Post by Timothy Shriver, Chairman of the Special Olympics and long time advocate for those with intellectual disabilities. In part Shriver was inspired to write because of a series of articles in the New York Times and specifically the death of Jonathan Carey. Carey was a 14 year old man with autism that died in the care of the State of New York. The state did not kill Carey but sure did play a significant role in his needless and tragic death. What has struck me about the story of Carey's death is the lack of a response. Just another person with a disability that is dead. Ho hum. This makes for filler on newscasts and newspapers. Worse yet, Carey is the tip of the iceberg according to Shriver--and he is sadly correct. The death of people with a disability is somehow seen not as tragic but a release from their suffering. This makes the general public feel good but scares me to death. It is indicative of a social, governmental and health care failure. This has led Shriver to postulate:

"How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".
It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity.

The phrase "out of sight out of mind" comes to mind. We shunt off people with disabilities to group homes, nursing homes, resource rooms at school, special seating at stadiums and in mass transportation. This sort of segregation is not only allowed but socially sanctioned. It is perfectly legal. It is also wrong and destroys the lives of millions of people with a disability. The disability does not matter--the social isolation and intolerance is simply wrong. What I want to know is when will this end? How many more people need to die before we as a society will not tolerate such abuses?

Grim News on Both Sides of the Atlantic

Every evening I look out my living room windows I consider myself an exceedingly lucky man. I have much to be thankful for. My life is rapidly resembling what it was before my wound last Fall. My son is home from college and we have spent some real quality time together. My family was and remains supportive. All this is quite unusual for a person with a disability. The ordinary is too often not possible for people with a disability. When I openly state this to others I know they look at me and roll their eyes. Come on they say, things are not that bad. They are correct. For me life is sweet. Life is not so sweet for my fellows with a disability. How do I know this? It does not take much thought on my part. Simply living life I come across needless obstacles large and small. I read about discrimination people with a disability encounter every day. For instance, a man was forced off an airplane by a pilot who deemed him a flight risk, a person with Down Syndrome was barred from boarding a flight, a couple being refused service in restaurant because they used wheelchairs, service dogs barred from schools, and the list of violations goes on and on. Little or nothing is done. Pilots get sent to sensitivity training, airlines are fined, and the cycle of civil rights violations endlessly repeats itself. Progress is a myth--or so I think on this gloomy day. I am gloomy not because of the weather but I have carefully read two well crafted and researched surveys. The results are troubling.

The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:

56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment.
50% of people with a disability report experiencing weekly if not daily discrimination.
37% report people's attitude toward them have gotten worse over the past year.
41% of people without a a disability state they have never witnessed a person with a disability discriminated against.

The ARC survey is equally grim.

Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.
58% of parents report spending more than 40 hours per week providing support for their loved one.
46% of parents report that they have more care giving responsibilities than they can handle.
88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.
1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member.
75% o families cannot afford or find after school activities, home care providers, or respite care.
62% of families report services utilized have been cut or eliminated.
43% of families report that schools have cut back on services.
32% of families report they are on the waiting list for government funded services with an average wait of more than five years.
A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.

I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.

Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.

Catching up: Me and Roy Campanella

Wow, it has been a while since I have put up a post. No bad news to report here. I am just delighted to slowly be getting my life back. I am sitting up more and more each day. I am doing more each day. Things that were once a chore are now a delight. This week I did a major expedition to the grocery store. The first time I have done this mundane chore since September. My timing is perfect as my son is home from college and eating me out of house and home. No human can eat as much as a hungry 19 year old male. I am also getting out on the water--yes, I have been kayaking twice. I re outfitted the interior of my boat with mixed results. The good news is my skin is exceptionally well padded. The bad news is sitting on a roho cushion has severely limited my lateral stability. Skin cares comes first so I am hoping to adapt.

Speaking of adapting, I read a new biography about the life of Roy Campanella. Campanella was among the first black men to break the color barrier in baseball. The history of baseball, particularly integration, has always fascinated me. I have the utmost respect for the men that endured the grossest forms of bigotry to integrate baseball. How men such as Jackie Robison endured the abuse he took is beyond my comprehension. He was far from alone however. In fact, as the biography of Campanella points out there was a very good chance Campanella and not Robinson could have been the first black player in the major leagues. As much a this history is of interest to me I read the book for two reasons: to learn more about the relationship between Campanella and Robison, secondly, to learn about Campanella's post baseball life as a C 5-6 quadriplegic circa 1958. The book in question, Campy: The Two LIves of Roy Campanella by Neil Lanctot, will be of great interest to baseball historians. More than any other author to date he delves into the rocky relationship between Jackie Robinson and Campanella. This contribution is counter balanced by the poorly done chapters on Campenalla's spinal cord injury in a car crash and his life as a paralyzed man. This is a small part of the book (just three chapters of twenty) but undermines the solid scholarship that preceded it. The author, Lanctot, is a baseball historian and has written a previous book about negro league baseball. Thus to be fair he likely knows nothing about disability history. It appears as if his history of disability was limited to rehabilitation, specifically Howard Rusk and the famed Rusk Institute where Campanella was treated after his injury. The lack of attention to contextualizing Campanella's injury is not just unfortunate but leaves the reader with the unmistakable impression that a spinal cord injury is the worst possible thing that could happen to a human being. I certainly do not recommend the experience but what is ignored amid the obvious loss of movement is the social consequences of paralysis. This is where the author could have made an important contribution. Instead he accepted the dominant sociocultural belief--paralysis is a devastating physical injury. This is of course true but the real ramifications are social. Few if any people that walk can make this critically important leap in logic.

In the final three chapters of the biography of Campanella the author frames his spinal cord injury in an overwhelmingly negative tone. Negative even for a baseball book. Here are some examples:

"the almost superhuman recuperative powers that had brushed aside a blistered eye, dislocated thumb, and mangled hands now failed him. Hour after hour, he lay like a corpse, his legs useless, his arms could be extended but able to little else".

"He was what the doctors called a C5 C6 quadriplegic, an utterly dependent prisoner of the Stryker bed, with no control of his bowels or bladder".

"Just getting of the car into Salt Spray [his home]was an ordeal, involved a sliding board and the formidable hoisting skills of his now live in attendant".

"Outwardly, Roy appeared to be handling his plight rather admirably".

"Roy's triumphs--the TV shows, the benefit, the book--all helped keep the worrisome bad thoughts under control. But painful reminders of his past glories and current limitations were inescapable".

"The third Mrs. Campanella proved to be exactly what Roy needed. Thanks to her earlier nurse's training, she was unfazed by his quadriplegia and her attentiveness was nothing short of phenomenal".

"For all his undeniable mastery of the wheelchair he was still utterly dependent out of it. Each morning he began with a two hour ordeal of being lifted out of bed, bathed, shaved and dressed by an attendant whose devotion to the job was often suspect".

"Baseball, though a welcome respite as always, could only temporarily distract him from the day-to-day struggles of a quadriplegic's existence. His life remained limited to the bed or wheelchair, an especially cruel punishment for a man who had once loved nothing more than taking off at a moment's notice".

The above passages are only the most aggregious. I dislike critiquing authors for the books they did not write rather than for the book published. In this case I think the author missed a golden opportunity to delve into the history of disability. I do not expect it to be his focus but he does have the obligation as a historian to contextualize his work. He utterly failed to do this. Yes, he discussed Howard Rusk but did not bother to mention why Campanella never got a job in baseball, visited many stadiums that had no access at all and was often carried to his seat when he attended a game. Surely this compounded Campanella's perceived struggle. This struggle however was not with his body but rather society's failure to accommodate his difference. In this, Campanella shared much with his paralyzed peers who the author states he felt close to. But that is the extent of the analysis.

Maybe I am not being fair to the author--this is afterall a baseball book. But I think I have the right to offer my views as the sub title does refer to the so called "Two lives of Roy Campanella". It is this second life, one with paralysis that is exceptionally weak. It left me wondering what Campanella really struggled with--was it racism in baseball or paralysis. Obvious and striking parallels could have been made but were not. In short, to use a bad pun so rampantly used in sports, the author really missed the ball.

Unlocking the potential: using business archives as primary sources

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???Business archives are the ugly duckling of the archive world. Those business collections that have made their way into local records offices or university archives are frequently left uncatalogued by archivists and unused by researchers. They are seen as bulky, complicated and too specialist; precious spare cataloguing time is spent on other classes of records. Externally funded projects are often the only way to get large business collections accessible (a good example from 2010 is the Chance Brothers of Smethwick, http://www.chancearchive.blogspot.com/)

The aim of the Powering the World project was to ensure that Wales� most important business collections were catalogued. The project is now in the final month and all 10 collections will be accessible from July. ARCW (Archives and Records Council Wales) has now been awarded funding by CyMAL for a follow on project. It will extend the work already completed by promoting the collections which have been catalogued, highlighting the importance of business archives and encouraging their use for research. Planned activities include a travelling exhibition, leaflet and web pages on ACAW (http://www.archiveswales.org.uk/).

One of the aims of this new project is to encourage the use of business archives in teaching and research, using Swansea University as a pilot. The collections chosen for the project all have significant research value, and it is hugely positive that we can now explore their potential uses.

Here are my top 5 reasons to look past the �ugliness� of business

collections (double entry book-keeping is my personal adversary) and see their �inner beauty� (their value as a primary source): 

1. They�re not just for economic or business historians. It�s true that financial records can be an excellent resource for quantitative research, but business collections can also consist of minute books, letter books and other papers suitable for qualitative research for all sorts of disciplines.

2. They can complement other sources. Business collections held at local record offices are often overlooked in favour of school or church records, family/estate papers etc, but they can actually be used alongside them. Individuals, communities and the local landscape were shaped just as much, if not more, by local industry.

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Plan from the South Wales Tranport Company collection, as
submitted with parliamentary bill for session of 1891

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3. Although survival of business archives before 1800 is uncommon, they can still pre-date statutory records (e.g. births and deaths registration from 1837  or company registration from 1844) 

4. They can help you find an original piece of research. Because these business collections have been left uncatalogued, they have rarely been used. So, if you find something of interest for a dissertation, PHD etc, you�re almost guaranteed no-one else has used it as a source before.

5. Expect the unexpected! The entrepreneurs who founded some of Wales� most important companies were very active business men, with their fingers in a lot of pies. Consequently their papers often contain some surprising documents.

For specific and detailed examples keep an eye on this blog over the next few months where I�ll be focussing on the research potential of the Powering the World collections.  

You Cannot Kill a Bad Idea: The Exoskeleton Lives

Berkeley Bionics, the California based developer of the the exoskeleton I have railed against is in the news again. In a media release they have announced a partnership with ten of the nations leading rehabilitation centers. Yes, the exoskeleton is going to be used at ten leading centers for rehabilitation. I do not know whether to laugh or cry. I am sure Berkeley Bionics is thrilled--the stock worth will surely go up. The rehabilitation centers, some I admire, get a cool new toy to play with. This will draw newly paralyzed people and the skeptic in me wonders if this too is about profit margin. These ten rehabilitation centers will become the first "eLEGS Centers in the world". If there were audio to this blog you would hear an audible groan.

I am still stunned the exoskeleton gets heaped with such praise. It was one of CNN's top ten innovations, a Wired top ten gadget, and one of TIME's best inventions, all in 2010. The hype and media reception over this device puzzles me. I get the hype coming out of Berkeley Bionics--they are a corporation, a new one at that, trying to make a name for themselves. Thus I can dismiss words from Eythor Bender, CEO who thinks "We are on the verge of a new era of mobility for people with paralysis, using bionic exoskeletons -- first in rehabilitation centers -- and later making them available for home/personal use. We have been fortunate to team up with some of the most respected rehabilitation centers in the world, embarking on this important journey". The journey Bender refers to I would suggest is first and foremost one designed for profit. That profit starts with creating customers in rehabilitation centers too naive to understand the larger implications of the exoskeleton.

I do not blame newly minted paralyzed people with wanting to try out the exoskeleton. In theory it sounds like a good idea. I do not blame rehabilitation centers for trying this new technology out either. I would think there is some possible medical benefit to the exoskeleton, especially for a very young person with a spinal cord injury. And since I am an American, and we Americans love to play the blame game, where does the blame lye in the glorification of the exoskeleton? I place blame blame on American society at large for consistently refusing to perceive wheelchair use as anything less than a tragedy. Terms like "wheelchair bound" are used daily and we as a nation refuse to value people that use a wheelchair. We refuse to make our buildings accessible--courts, schools, stores, stadiums, airports, mass transportation centers, hospitals, universities, etc. I have encountered obstacles at each one of these places--not twenty years ago when the ADA was passed into law but today. What happens when I complain about the lack of access? I am deemed unreasonable, a bitter cripple who wishes he could walk. This line of reasoning makes me crazy. It misses the point so badly it would be laughable if it were no so common place. I am mad because we do not value access--it is not expected or desired. We only provide access because it is the law. That law, civil rights legislation called the ADA is begrudgingly adhered to but no one really cares. If people cared I would not encounter the needless architectural problems I come across daily.

Into the void of not caring about access for people with a disability, by access here I mean equal rights not only terms of architecture but civil rights, we waste valuable and limited resources with dubious inventions like the exoskeleton. This highlights a problem that has plagued the ADA--the notion of a "reasonable accommodation". The people who decide what is reasonable are not people with a disability--they are simply not in positions of power. Into this void steps (pun intended) the exoskeleton. Anyone who can walk thinks walking is the best form of locomotion. They are right it is what the human body was designed to do but I would argue a wheelchair is no less efficient means of motion. I do not know a single content person that uses a wheelchair that dreams or has ambitions of walking again. We simply move on with life. We get jobs, have a career, family,etc. If we have any mutual desire it is for more efficient reliable wheelchairs. Here is where I get upset--imagine if the resources put into the development of the exoskeleton were put into wheelchair technology? What inventions, new designs, different materials could have been developed as a result? I assure you finding a high end wheelchair is no easy task. American manufacturers have no interest in the development of high end wheelchair because insurance will not pay for such wheelchairs. And insurance drives the wheelchair business.

Do not take my extended complaints about the exoskeleton to infer I am anti technology. Nothing could be further from the truth. My point is that all technology has a social element and I cannot overlook the very bad message the exoskeleton sends. Indeed, it makes me mourn for a simple time when people who were paralyzed were told point blank you are paralyzed and will never walk again. Yes, this is a hard reality to accept. However people, once paralyzed, need to maximize the muscles they can move and this is where technology need to be directed. Thus while the exoskeleton makes headlines another technological innovation received scant press. Here I refer to an invention that I think combines technology with an additional cool factor. The New York Times reported about a device that enables a high level quad to steer his or her wheelchair via a tongue piercing. The magnetic stud would allow a person to steer the wheelchair with their tongue thereby negating the need for a sip and puff wheelchair. This is exciting to me--it combines non traditional body modification and technology in a way that truly empowers a person (curiously this story appeared in the Health section of the NYT and not Technology section).

The point I have tried to stress is that technological innovation is designed to meet a perceived social need. There is no need to walk after a paralyzing injury. The only need I have along with all those who are paralyzed and even more generally disabled in in some way is to be valued, our simple presence wanted. This starts with being treated equally--that means equal access to all parts of society. This is very much a minority viewpoint. To consider one's paralyzed body equal requires going against the social grain. I have been doing this for the past thirty two years and hope someday it will no longer be necessary. Inventions like the exoskeleton and the resources used to develop it make me doubt that day will be coming any time soon.