Inspiring, Heroes, and Men of Steel at the X Games

The X Games were on this afternoon. I spent much time reading and watching the games with limited interest. I like the X Games but have a short attention span. My main reason for watching is to see the mono skiers compete. These athletes, world class athletes, are not only gifted but on the cutting edge of adaptive ski technology. For the most part, the announcing was good. The principle focus was on the competition and the technology and skill involved. For the first time, a short special segment was included that explained how mono skis work. For a general audience, the mono skiers were compared to stand up skiers. I came away impressed and the segment reinforced what I already knew--adaptive skiing is physically more taxing and technique is of paramount importance. The only problem I had was the announcers made a point of stating how "inspiring" the adaptive skiers were. Apparently "they all deserved a gold medal" and one announcer crowed "they were true heroes". Oh spare me! The men that competed are athletes--gifted athletes. I have no idea what sort of men they are--they may be great guys or they could be not so nice people. I also know they are no different than any other athlete that competes during the X Games. However, only the adaptive athletes were labeled "inspiring" or "heroes". To me this is as bad if not worse than being labeled "special". It is in essence demeaning. Athletes that walked onto the slopes were not inspiring or heroes. They were just athletes.

The coverage of the adaptive athletes made me cranky. Combine this with a penchant for people to describe me as "strong willed", "tough", "hard assed" or that what I am experiencing with my skin is "unimaginable". I think all of these statements are way off base, dead wrong in fact. I am not that tough nor am I strong. Strong men do get depressed. Strong men do not cry. Hard asses do not feel sorry for themselves. I am guilty of all these things and more, far more than I am willing to admit on this blog. I have been unkind to friends and family. I have lashed out at those who want to help me. Worse yet, I have said things I deeply regret. The reality is I am a man with no options. I must stay in bed if I want to heal. I desperately want to heal. In short, I have no other choice but to endure day in and day out. I am enduring but I am miserable. Yes, I know there is an end to my time in bed and that I will be healed in a month or two. To me, that means more dependence on a daily basis. The knowledge I will heal at some point in the future does not help me be happy when I wake up. The reality is I am doing the best I can. It is what any other human would do. It is what paralyzed people do. It is what people that can walk would do. My experience, paralysis and the way I cope does not make me anything other than human-a deeply flawed one at that.

From Single Channel to Omni-Channel

Whats happening in the world of Retailing

1. Groupon - daily deal site is gaining popularity each day with better deals and more redemptions. It has now expanded in India, Israel, Malaysia and South Africa
2. Facebook is letting marketers be more and more innovative through the use of its site. Recent example, Facebook lets marketers turn consumers interaction (comments) be turned into ads, Marketers acknowledge learning a lot about their products from facebook discussions.
3. Marketers are dubious about the quality of their customer data/information even though they have a documented data quality strategy
4. Online retail sales to increase at an average rate of 10% from 2010 to 2015 and will reach $280 billion dollars in US by 2015.
5. Free shipping is a standard option for retailers with minor variations
6. Oracle buys ATG for almost 1 billion dollars cash, with this Oracle will get to strengthen its back-end retail services like customer relationship management, order management and supply chain management.

Powell Duffryn Limited

I have started cataloguing the final collection of the project, the records of Powell Duffryn Limited. At the moment I am doing as much preliminary reading as possible to get my head around the various amalgamations, takeovers and names changes, both pre and post nationalisation. 

It looks set to be a very interesting collection, with lots of research potential; the company was once the largest colliery company in Great Britain and were pioneers of research in coal mining and utilisation.

Undermining Be Gone

I was at wound care today. The surgeon that has followed my care, did the bloody debridements, has not seen my wound since December. This is a long time and what she saw today was nothing short of wonderful. The biggest obstacle I have encountered to healing, significant undermining, is virtually gone. My wound is largely superficial and about the size of a small meat ball. The wound bed remains "lovely" if not awesome. To me it just looks like raw chop meat. Regardless, the biggest problem, one that could have required surgery, no longer exists. Hence no surgery for this man. Indeed, there is a good chance the wound will be healed in one month. Yes, one month, four weeks, 28 days. This means I may ski in March. Spring skiing here I come! Okay, maybe this will happen. I have come way too far and been stuck in bed for way too long to take any risks. At worst I know I will be kayaking come spring. Life is looking quite sweet right now!

Here is a a vow. I will never ever put myself in the position I did last Fall. I will take photos, use mirrors ask family to check my skin. I have learned the hardest of hard lessons. This has me thinking: imagine a health care system that cares about paralyzed people. Imagine the lives saved if every paralyzed person had their skin inspected by a professional. Think of the savings. No wound care needed, no hospitalizations, no time lost at work etc. Yes, this is a pipe dream but nothing can spoil my mood today.

I also had a sweet if not wonderful exchange with two kids and their mom. My look has changed since the fall. No more long hair and pony tail. I now have short hair and a beard. My beard is white, my hair dark. The two girls I met were three and five. Theses kids were cute as a button and dressed in snow gear. After they cheerfully exchanged pleasantries with me they whispered to one another. I asked what the whispering was all about, they looked at their mom who gave the nod of approval and the three year old said I looked like Santa. Oh, how this made me chuckle. I can see it now-next Christmas I will dress up as a paralyzed Santa.

Stupid Stuff and a Great Divide

I have been living independently since i graduated from college. I have been lucky enough to have had and have a great life. Part of my great life revolves around being paralyzed. I do not perceive my disability as a negative--I never have and never will. It is just the way it is-I am paralyzed and that is a fact. I consider paralysis to be no different from any other human variation. Tall versus short, male versus female, fat versus skinny. We all exist on a continuum of sorts. Along with paralysis comes some unique issues. Urological complications abound which can be managed. Skin issues require constant vigilance. So what I say. No human body is perfect nor do all bodies function well. Mental illness can cause havoc as can cancer and a host of other physical issues. My bodily concerns are just more obvious and certainly unusual. As a result accessing health care--good health care that is--is more problematic. Too many doctors and health care professionals see me and think one thing--trouble. The point I am trying to make is that life as a paralyzed person is different. To me my body is normal, to others it is not. Doctors are pretty good at masking their views--they hide behind a cloak of professionalism. Your average person does not hide his or her views. Over the last three decades a veritable revolution has taken place in terms of disability rights. When I was paralyzed at the age of 18 I had no rights. I did not have the right to a public school education, I could not access mass transportation, and the country was grossly inaccessible. Simply put, disability rights did not exist. Today things are much different. I have civil rights that are protected by the ADA, I can access mass transportation and social barriers crumble daily. Yet barriers remain common place. As a result, I feel as different and apart from mainstream society as I did when I was 18. What has changed is the way that difference, my paralysis, is negotiated socially. Sometimes I encounter stunning bigotry and at other times my disability is not relevant.

What prompted the above thoughts? I am dependent upon others to help me. Nothing that my friends and family now do is important. What they do is ever so ordinary--the things I once did without thought. They go to the supermarket for beer or pick up my favorite rum, Sailor Jerry. They go to the post office, hardware store etc. All the errands I cannot run they do for me. On top of this family and friends do stuff around the house--change light bulbs, bring in fire wood, vacuum, clean bathrooms etc. I am exceedingly grateful for what people do. I could not exist without this help. But as I feel asleep I thought I am without a doubt a picky pain in the ass. I like things done a certain way. I acknowledge this as a weakness though when it comes to work it is an advantage. I can find citations from 20 years ago in a second and have copies of every article I have ever written. This attention to detail filters into how i keep my house. My home may not always be the cleanest place but it is always tidy. I know where everything is. Shoot I can find anything in the dark in the middle of the night. Given this, the way others help me makes me nuts--my friends and family do not know how, why or where i keep thing. Ad in my unique placement of household items as a paralyzed person and life can frustrating. However, after four months the frustration level is gone--I think where people put things is funny. My poor brother is "firewood man". He hauls in a lot of firewood. He does so with a smile on his face and never complains. In exchange he drinks my beer and eats my cold cuts--food he picks up and delivers to my house. He also drives me nuts. The other day he put away a rice dish I made (he also did the dishes without me asking). He put the rice leftovers on the top shelf of the fridge. He may as well have put the rice on the roof. He turns out lights not by switch on the wall but via the light itself. I cannot reach the light. This is not in any way a complaint. Instead it highlights just how different I am. He puts stuff on the top shelf of his fridge all the time. He is doing this without thought. Amazingly it is not just him. I even catch myself thinking like I was still bipedal. Years ago my son and I cleaned our hardwood floors. We used butcher wax and moved every piece of furniture in the house. On our hands and knees we buffed the floor. The wood shone like new. At the end of the day we stopped to admire out work when I saw an adult boot print on the floor. "Damn it, I yelled. Look what I did to the floor with my shoe"! He looked at me and I looked at him and after a long pause we both burst out laughing.

I am not sure what to make of my bodily difference. I do know when I am treated with an utter lack of respect due to the fact I use a wheelchair I get mad--very mad. I find such bigotry hard to fathom. But then all bigotry makes no sense to me. I think we humans fear difference and much of bigotry is based on that fear--the lack of familiarity with a given difference. What I concluded last night was that we need to have paralyzed people occupy all social and economic strata. Once we become commonplace our existence will not be perceived as being different. For that to happen we as a society need to radically rethink what is known about disability. We will need to support all people with a disability. We need to value the existence and contribution people can and do make. We need to stick together for I think a common bond exists between all people with a disability. Ed Roberts long ago called this bond "cripple power". A true visionary, Roberts was right. There is power in being crippled. We need to harness that power, form a strong political alliance and change the world as we know it. Now that thought gave me pleasant dreams.

Snapshots of commercial and industrial Cardiff

Cataloguing of the records of Cardiff Chamber of Commerce is now complete. Access to the catalogue will soon be made available in the search room of Glamorgan Archives (http://www.glamro.gov.uk/), and on the National Register of Archives (http://www.nationalarchives.gov.uk/nra/default.asp)


One of the highlights of the collection is its extensive set of photographs. Business archives often include photographs, sometimes full series commissioned by the company of their founders or premises, sometimes just individual photographs which accompany documents such as product prototypes.

The Cardiff Chamber of Commerce collection contains over 180 photographs, dating from 1882-1940. They include views of industrial processes, Cardiff docks, troops boarding a vessel (Taloa) during World War I, paddle steamers, portraits of the prominent members of the Chamber and other key businessmen of Cardiff. It also includes a few impressive aerial views of the Barry coastline taken by Aerofilms Ltd, believed to be the UK's first commercial aerial photography company.

View of East Dock at Cardiff, taken Apr 14 1883 by Alfred Freke 
DCOMC/30/2/6 Glamorgan Archives 

Invisible People

My views about disability within an American cultural context have shifted significantly since 2007 when I read about growth attenuation for the first time. I was shocked--stunned that parents and doctors could come up with something the media dubbed the Ashley Treatment. Actually it was not the media but the parents that coined the term on a blog that was deeply disturbing. What disturbed me was not the child in question nor her profound disabilities. Instead it was the parental response and the doctors who accepted a medical model of disability without any consideration of the social implications. That is what does growth attenuation directed at a specific population of people say about American society--a question worth asking given the finality and ethical implications of such a decision. I cannot competently comment on the medical aspects of the Ashley X case. I must trust the doctors charged with the child's care and believe they truly were trying to help the child and family. I can however question their decision making strategies and the assumptions made about what life is like with a disability. Sadly the medical establishment is slow, painfully slow, to acknowledge people with disabilities have the same goals and aspirations as those without a disability. It is as though they, doctors, nurses, social workers, therapists and all those that work in the health industrial complex, cannot look past the given physical deficit and consider that society is as problematic as any disability. What good I would posit is to give advice to a paralyzed person to remain off a pressure sore if they cannot miss work or need to care for their family. Such advise in a social vacuum is worthless. Likewise, why is it that we as a culture fear those with profound cognitive deficits? Why can't we acknowledge people with profound physical and cognitive deficits have inalienable rights? Ashley X had rights and those rights were violated. I have rights and those rights are routinely violated. I am seen by some, few I hope, as damaged goods--a problem that needs to be solved and then quickly forgotten. This is why I have bonded with Ashley--we are different but our rights are the same. The same as all those that walk, talk, and work.

Why do those that walk, talk, and work demonize those with cognitive disabilities? A factor is surely fear. We Americans fiercely protect and defend our independence or what ethicists label autonomy. We will do anything to protect that independence. But what of those that cannot be independent? What do we think of them? Well, based on my reading within the medical realm we do not think of them at all. We create groups homes, special schools, institutions, nursing homes, all warehouses to sanitize society's discomfort. I know this because some people are uncomfortable in my presence. Some would prefer it if I simply died or disappeared. I know this for a fact as I have been told this point blank. I may be stigmatized in the estimation of some but it pales in comparison to those who have profound disabilities like Ashley X. I read many parental blogs written by parents of children with such disabilities and they are moving and heart breaking. I am moved not out of sorrow but of the social isolation having a profoundly disabled child needlessly causes. Why I wonder can these children not be incorporated into schools and other social institutions. The answer is simple--we as a society choose not to. Thus this population is invisible. Claire Roy at Life with a Severely Disabled Child recently wrote:

NOW, show me a picture of a kid in an involved wheelchair, with a vent, a g-tube pump and a suction device. Show me a kid with combined severe cognitive and physical disabilities. Talk about dystonia, spasm, tone, seizures, scoliosis, drop foot, silent aspiration. Show me the parent(s). Show me how they are living. In short...show me something that I can identify with. Show me something that acknowledges the existence of this type of disability and everything it entails. Openly discuss struggles as well as joys. Tell me, tell my kid that what is important is just getting on with our day to day lives as best we can, even without a specific contribution or goal or happy-ending-in-sight. We can be "happy" and "successful" if you broaden the definition of those words.

The images Claire Roy wants to see are nowhere to be found. When I read the above I admired the passion--here is a woman that loves her child unconditionally. She is thus like any other parent that wants what is best for their child. But we as a society have failed Roy, we have failed her daughter, we have failed the father, we have failed the family. These thoughts led me to reread the Hastings Center Report on growth attenuation yet again. I was struck by the similar larger thoughts--and her Roy must be screaming NO! But there is a shared belief between Roy and the Hastings Center Report's findings--findings that have been ignored. Here I refer to the statement that "It is clear that these families [those of children with profound disabilities] need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities". Okay, there is no passion here and one could quibble with the language. Regardless, both Roy and the Hastings Center Report decry the lack of support for those with profound disabilities. No group in my estimation is as socially isolated. And let me tell you in recent months I have learned far more than I ever wanted about social isolation. Thus Roy's words hit home hard especially when all I read about are budget cuts that affect the most vulnerable--people like her daughter and, well, me. Like Roy's daughter, my care is compromised by a health care system that poorly equipped to meet the needs of those that are different. In the USA people such as myself are effectively cut off from accessing adequate health insurance. Medical facilities remain grossly inaccessible. For instance, I have never been weighed at a routine check up. In fact I have seen one working scale in the last 30 years. To me this is no different from segregation--and we all know that segregation is inherently unequal. It is the legal bedrock of our educational system. But we people with disabilities are ever so "special". By special I mean segregated and in some cases invisible. I am not invisible nor should Ashley X, or Roy's daughter be invisible. We are humans and as such we have civil rights, human rights according to the UN. I doubt the social struggle parents of those with children with profound disabilities will go away any time soon and I sure as hell know growth attenuation is not the answer. What I am railing against is nothing short of a needless social tragedy. I consider these parent great allies in the struggle for disability rights. And I hope to some day see a real civil rights movement take place--one that will be splashed across the headlines of national newspapers and cause college students to protest. This is perhaps a fantasy as the disability rights movement is virtually a stealth movement--unseen by the mainstream. So aas part of my new found effort to be positive I dream of the day all Americans support the rights of those with a disability.

At a Lose for Words

I have always considered myself a lucky person. I was blessed with the best parents, great siblings, and have had phenomenal family support my entire life. In college I feel in love with an area of study, anthropology, and have been able to cobble together a career that has been rewarding. I thoroughly enjoy writing and have a decent or perhaps modest publishing record. Teaching college students at Purchase College is rewarding in the extreme. I also have a wonderful son who I love very much. I am proud of him and since he left for college am stunned by his growth and maturity. I joke with others that I have spawned a responsible adult. I live in a nice home an hour from New York City, one of the most cosmopolitan cities in the world. I even have a black lab, Kate, I adore who makes me laugh out loud at least once a day. In short, I have much to be thankful for, especially now as I know without family support I would be in a nursing home. Yet even with all these wonderful things going for me I am pretty much miserable. I feel as though I have no joy in life. For the first time work is not enough. Writing is not enough. Reading is not enough. Television is not enough. XBOX is not enough. I want more. I want my life as I lived it. I am not sure when I will get that life back.

What prompted the above? I saw the plastic surgeon last week. I did not see your average plastic surgeon, I went big time and saw a highly respected surgeon from New York City with lot of experience with flap surgery. He examined my wound and told me that flap surgery is not the panacea many believe it to be. There are some very real down sides to such surgery if things go wrong. I have a wound that is healing, it has great granulation and is in the estimation of many "lovely". The surgeon thinks, though cannot promise, the wound and the troublesome undermining will heal on its own. If the undermining does not fill in it can at a later date be filled in with piece of muscle tissue from my thigh. This sounds pretty reasonable to me. Indeed, this is the first time I have seen a surgeon who did not emphatically state surgery was needed now. I don't know what to make of this. In my mind I had envisioned myself operated on and up and about in a week to ten days. My life returned to me. This fantasy did not take place and has sent me into a tail spin. I feel spent. I have accomplished little since September. I can live with that given how sick I was. What I am struggling with is the unknown. I do not when my wound will heal. It could be four weeks or it could be four months. It could need surgery, it might not. Victor Turner, an anthropologist I like coined the position I am in as being a liminal state. That is I am "betwixt and between"--I am not sick nor am I well. I am home but but home bound unable to function as I once did. I am dependent upon others but independent in many ways. I do not like being liminal. I do not like being on the sidelines looking at the world pass me by. As Robert Murphy wrote in the Body Silent, for many years people with a disability were liminal members of society. This was true in the 1970s and 1980s but somewhere in the 1990s things changed. Our rights were recognized, civil rights, were recognized legally. Sure those rights were ignored, belittled, and trounced upon. But they were acknowledged civil rights. I had the power as did other people with a disability. So without getting too analytical I think what has sent me into my tail spin is the overwhelming sense of being powerless. I cannot make my wound heal. No one can do that. Until that wound heals my life is reduced to a liminal state, one that brings back not so fond memories of when I was first paralyzed and treated as less than a sentient being. This was the norm circa 1978. The medical establishment reigned supreme and knew exactly what people with a disability needed--rehabilitation. They were correct, rehabilitation was needed but they failed miserably at suggesting what to do when it was complete. Worse yet was the paternalism--anything a paralyzed person did that approaches "normal" was an inspiration, a great accomplishment. Oh, how this angered me! I wanted, and once a while did, act out in frustration. I was not alone for anger when directed correctly is a powerful tool--it was what motivated a person like Ed Roberts and led to the founding of the independent living movement.

I do not think there is an answer to my tailspin. I am unhappy, miserable really, and think this is a logical response to my life as it is. Would therapy help? Well, I could do this I suppose over the phone. I hate the phone. I could ask for a prescription from my doctor but does taking a pill really make sense. Again, being sad, upset, and unhappy seems like a reasonable response. I do function--I am eating, bathing, caring for myself. I read, write a little, watch TV, play Halo (I have gotten much better), and get through the day. I just do all of this with no zest. I feel as though this is a dark time and one must remember and survive those dark times. I must remember how I feel now because assuming I am back to normal some day will get an abrasion on my skin. I will want to go to work or out of my home and the vivid recall of being in bed month after month will surely prevent me from getting up and taking a risk with my skin care. Likewise, when I do not feel like checking my skin with a mirror I will recall today and reread this entry. So for now I am content to let myself be miserable. I do my best to hide my unhappiness from others though I am not effective all the time. With those I am close to I talk about this problem--I do not want to fall into the rabbit hole of depression that claims the lives of too many people. I do not think I am there yet meaning a depressed state. That is one place I do not want to go-ever.

What am I doing to change my mood? I am going to do something, I just do not know what that something is. For now, I will try to look at the bright side of life. I envision myself skiing, I check the conditions in Vermont and New Hampshire at my favorite ski resorts. I look at pictures online and try to figure out where the people are. I am investigating custom multi use buckets for paralyzed people that can be used skiing, biking, or kayaking. I follow the New York Rangers closely and get satisfaction they are having a good season. I hope they make a deep run into the playoffs so perhaps I can attend a game with my son or brother. I try to talk to my son when he is not surgically attached to the couch, his computer or consuming mass quantities of food. I watch the birds of prey outside my window ride the thermals and hunt. At night with the outdoor lights on I gaze out at the icicles twinkling that now go from the roof to the ground.This is a first in ten years at my home. I try to invent things to cook in less than 20 minutes that are tasty, loaded with protein and easy to clean up after. When I do all this I am okay. I just need to get better at this and look forward to the day I am up and around and this dark time becomes a bad memory.

Wound Care Again

Last night was very bad. I found blood on my sheets and had a sleepless night filled with worry. Wound care came this morning and found a small tear likely from sheer on my right butt. The wound, though small and superficial, is still a significant worry. I am sitting very little, transferring with extreme caution and yet still having trouble. This makes me wonder what will happen when I am an older man (note the use of the word older). What got to me last night was the fear--fear of the future. For good reason, I have been fearful of skin problems and avoided serious complications. I was proud of this as I knew once such problems arise solving them is a time consuming process. I have now learned this in a visceral way. I am after all these months spent. I am tired, sick of my home, desperate for the ordinary and active life I once had. It has been months since I was outside my home. Sure I have seen various doctors and hospitals but not seemingly normal everyday activities. I wonder if I will ever return to that ordinary life. I cried last night for that loss.

As for my wound, last week wound care appointment was a bust. The doctor following my care could not see me. A surgical emergency came up. Bad timing for sure but those things happen. Perhaps I am more philosophical than most as I know when I was a sick kid I recked many schedules. Tomorrow I see a big time plastic surgeon in New York City. I have avoided seeing these men and women my entire life and must confess to being biased against the field. Any surgery I have had in my life was forced--as in I had no choice and any surgical result could only improve my quality of life. Thus I find it hard to fathom any choosing to do any sort of elective surgical procedure. We will see what the surgeon has to say but I know one thing for sure--he will say surgery. It is what surgeons do. I do not know if this is the right or wrong thing to do. I am going to have to rely on the plastic surgeon and doctor who has followed my care to make that determination. This is a huge leap of faith. I am not good at leaps of faith or trusting others. Here though I have no choice. I have done my research online, know how to have an educated conversation but when push comes to shove I am going to rely on the opinion of the doctors. How I wish I was not in this position. Wishing this is a waste of time. I need to deal with reality. How I deal with that reality has varied greatly in the last few months. A true emotional roller coaster this wound care business is.

Great Quote

I just came across the following quote by Eleanor Roosevelt:

"Where, after all, do universal human rights begin? In small places, close to home � so close and so small they cannot be seen on any maps of the world".

This reminded me of how misguided the parents of children are who seek out growth attenuation. The most vulnerable people among us are in my estimation important. They are humanity reduced to its basest element. How we care and value these lives says much about our culture. To date, we Americans do a very poor job caring for the vulnerable--the elderly, terminally ill and disabled. All are stigmatized, their lives deemed less valuable than those who are "productive". But what exactly does that "productivity" mean? In looking back on one's life are the monetary goals one reaches more important than love, children raised, family, and the contribution made to the world.

When I was a child my father never asked me how I did in school. Instead he would say "Did I ask a good question and think independently". Answers he told me can always be found but asking hard questions is what separates original thinkers from drones. He did not want me to be a drone. In retrospect I suspect he wanted me to carve out a different life than the one he led. Without knowing it he led me to become an anthropologist as we as a group always ask hard questions and defend the rights of the most vulnerable--often indigenous populations or minority groups. Little did I know I would join the largest minority group in America--the disabled. But I was prepared like few others. I had a penchant for questioning and life long propensity to reject the status quo. What I wish and think the above quote by Eleanor roosevelt gets at is that we all must assert our rights and the rights of those that cannot assert them independently. We must look into the eyes of the most vulnerable and see ourselves. We must protect those that cannot protect themselves. This is where I think growth attenuation fails miserably. Growth attenuation is a simple answer to a complex problem. It enables parents and doctors the luxury of no thought--no consideration of the other, people that do not nor will ever fit in with social expectations. What are there needs? Why are those needs not met? How can we force society to change and become a welcoming place for all those with and without expected cognition and physical prowess. I offer no answers today just hard questions. Questions I think my father would be proud I am thinking about.

What is in a Label?

I read many disability related blogs. The quality of the writing never ceases to impress me. Sure some blogs are poorly written but this flaw is negated by the thought provoking ideas presented. Some blogs are beautifully written and contain equally wonderful thoughts. I will not name names today even though that ranking disability related blogs would be fascinating endeavor. Regardless, I want to write about labels. I am inspired to do so by Eric who has a bog I regularly read, I am a Broken Man/You Cannot Break Me. In a post written on January 2 entitled "There is No Such Things as Disabled" he has thrown down the following gauntlet:

"How about we finally lay disabled to rest? I'd like to hear suggestions please. I'd like William Peace to put all 145 lbs behind this and chime in on what he thinks should replace disabled.
I looked at simply changing the spelling to dysability, but since dys still carries its meaning of bad or wrong, that won't work. Differently able. Different from Differe. My vote goes for differabled (leading to the use of the differability). I am quite serious so please leave your suggestions".

Eric does not break new ground in this post--a fact he points out. The important issue he raises is what is a disability and by extension how do we as a society disable people. I do not think of myself as having a significant disability in many social contexts. When I teach for instance my disability is not relevant assuming I can enter the classroom (this is no sure thing). Yet I am always perceived as having a significant disability--partial paralysis from the third thorasic verterbrae. This physical deficit is impossible to miss. I navigate the world using a wheelchair, a cool piece of technology in my estimation. This cool factor does not exist outside my household. My wheelchair is the ultimate symbol of disability. Society has a penchant for forcefully reminding me of my disability and inferior social status on a regular basis. If you doubt me, I suggest you try and use mass transportation or purchase a ticket to see a concert or professional ball game using a wheelchair. The point I am trying to stress is that society makes me feel disabled, it is a notion I cannot escape. Sure I forcefully reject this socially imposed inferiority but my staunch civil rights approach is out of the norm and at odds with what most people have learned or read about disability. What people think they know about disability is as old as it is out dated. Disability is a medical problem. Yes there is a physical element to disability that cannot be ignored but the real issues are largely social. A refusal to negotiate difference and as such disability based bias is the same as what other minority groups rail against. As an anthropologist I would maintain we people with a disability add another layer of complexity to our minority status. We are the other--outsiders within our own culture. We are in the words of Victor Turner "betwixt and between". We are not sick nor are we well. We are not purposely discriminated against but far from welcome. We are treated with benign neglect, out of sight and out of mind. Send a check to the poor bastards at Christmas time and thank out lucky stars we the all mighty normal people rule the world.

None of the above directly answers Eric question. I have an answer though I doubt many will like it. I reject labels and jargon. As an academic I know lots of jargon, lots of theories, lots of polemical arguments. Hell, I have engaged in such debates and never have felt like I learned a thing. I reject the word disabled. I reject the word handicapped. I reject the popular insider term gimp. I reject silly attempts at political correct terms that were fashionable for a nano second such as handicapable and physically challenged. I do not accept academic terms such as ableist because no one outside of disability studies scholars understands what the term means. I reject each of the above terms and years ago settle on the word crippled. Go look it up. Crippled in the dictionary refers to a physical deficit. That is it. Look up disabled and all sorts of connotations are associated with the word I reject. Cripple too has much cultural baggage. I want people, strangers and the uninformed, to think about this baggage. I want them to think--why would a man such as myself use the word. Cripple stops people. Cripple gets one's attention in a way that disabled or handicapped does not. People cringe when I use the word cripple to describe myself. My niece, a wonderful woman and program coordinator at an adaptive sports program is acutely aware of disability issues. She is a gifted person in dealing with those that have cognitive deficits. But when I use the word cripple she cringes and says "Oh, Uncle Bill!". I use the word not for her but the hordes of ignorant. As I have written many times all that people are taught about disability or appears in popular culture is dead wrong. The real problem we people with a disability encounter is the mainstream. Cripple makes these people think--it is not a word used regularly nor is it politically correct. I want to stop people as it is just too easy to gloss over disability related issues. In a newspaper for instance it is easy to glance at a headline "Budget Cuts for Special Education" and think ho hum and move on to more important issues. In contrast, a headline such as "Cripples Protest Budget Cuts" will make one read the article. Likewise, my use of the word cripple forces people to think. In choosing cripple I was inspired by Ed Roberts, founder of the independent living movement, who wrote about "cripple power" in the 1970s. Roberts is my hero. He is a cripple I admire. I am a cripple and embrace this word in the hope it makes others feel uncomfortable. I want people to be uncomfortable because I want them to think about my civil rights. Those civil rights are ignored, belittled, and violated even though it is against the law. One final silly point. I do not weight 145 pounds. I have lost weight since the Fall and developed my wound. I aspire to be 145 or even a buff and manly 150 pounds.