Assisted Suicide: No Assistance Wanted

I do not want to die. This sentiment hardly makes me unusual. What does make me different is I have a legitimate worry. I worry someone will decide to kill me. I do not think someone will kill me maliciously, for spite, or hate. I worry someone will kill me with kindness in their heart. I am not paranoid. I know more than a few other people with a disability that have the same worry. Like it or not, people with a disability are not valued. Our lives are deemed tragic. Social expectations are limited at best. No one expects us to have a job, be a parent, or live a vibrant life. No, our role is to get well. For me, that means I should spend all my time thinking about walking. I should go from doctor to doctor to make this happen, subject myself to experimental stem cell treatment. If I did this I would be lauded as courageous. I consider efforts for cure to spinal cord injury an abject waste of my time. I can happily leave that quest to medical researchers. Instead, I rail against social prejudice and the stigma that clings to disability 20 years after the ADA supposedly made me equal to my bipedal peers. Of one thing I am sure, in daily life and in particular a hospital setting I am very far from equal.

I have been preoccupied with end of life issues since I read an article by Neil Shapiro in the Monterey Herald entitled �Right to Die Gives Dignity to the Disabled� (3/21/11). What strikes me as remarkable is the universal social support people with disabilities receive if they express a desire to die. Why is help to die given so willingly when social supports that are needed to live a full and equal life with a disability despised. Do not doubt me on this. Think for yourself. Read about draconian budget cuts sweeping the nation that adversely affects people with disabilities. Better yet talk to a parent of a child with a severe disability. They can regale you with horror stories about how they have to fight tooth and nail for the most basic support. Talk to a person with a disability who has no job or health insurance and as a result cannot afford a good wheelchair or cushion to prevent a pressure sore from developing.

Many disability studies scholars have explained why people with a disability are not valued. They argue knowledge is socially situated and has inherent logic to its members. Identities are socially constructed and fit into the aforementioned socially constructed knowledge. Certain bodies, disabled bodies (my body) are excluded from dominant social ideologies. The disabled body is inherently flawed. The person with a disability must be in pain, physical or mental. The person with a disability must be unhappy with his or her flawed body. The person with a disability has thus lost their dignity. The person with a disability has lost control and independence. This, for Americans, is a fate worse than death. So it makes sense to put the poor bastards out of their misery? Ah, no it does not. What the above reasoning utterly fails to consider is why. Why are people with disabilities shut off from routine social interaction? Instead of addressing this vexing question we have people like Neil Shapiro who out of the kindness of his hearts wants to help people with a disability die. He also thinks Dr. Kevorkian was a �quirky Michigan doctor�. Shapiro wrote:

�It seems to me that the right to decide that one has suffered enough, that whatever joy remains in life is outweighed by that suffering and that it is time to die, is one of the most fundamental of human and civil rights. Why should one's neighbors be able to dictate that one should not be able to terminate one's unbearable pain? But unless we follow Oregon and Washington, we may never have this right.
There is a great irony in all of this. Those who are not incapacitated are physically able to commit suicide, and need no assistance. Those who require, but are routinely denied, that assistance are the disabled. We spend billions of dollars making sure that they have the same right as the rest of us to shop, visit the beach and the like, but we deny them the right to die with dignity. Go figure.�

Where do I begin? If it were up to my neighbors as Shapiro puts it, I would have been denied an education. I would not be able to get on a bus or plane. I would not have a job or be father. We people with a disability had to fight for these fundamental rights. Even though we people with a disability are supposedly equal I have never felt that way�ever. The idea of equality for people with a disability is illusive at best. As for the billions of dollars spent on access, which Shapiro seems to resent, has saved countless lives, mine included. But just because we spend money on access and inclusion does not mean we value the people who are supposedly equal and included. When it comes to disability rights, as a society we merely pay lip service to these inherent civil rights most take for granted. We do not in reality accept the presence of people with a disability. If we did I would not be forced to enter the back of so many buildings or have to call ahead to ask about access on a regular basis. Simply put, the disabled body remains unwanted and is perceived as defective. Worse yet, the disabled body is costly. Hospitals remain grossly inaccessible. Efforts to be inclusive are often ignored or belittled. The message society sends is not subtle. There is a word that comes to mind�oppression. Add in an illness, social isolation, dependence upon others and the logical leap to thinking my life is not worth living is dangerously short. Thus it is ever so easy to write one wants to control the way we die and the circumstances surrounding death. This desire is understandable but in my estimation dangerous for people with a disability. We need to take a much closer examination of the pros and cons to assisted suicide. When we do sentiments such as those expressed by Shapiro will be deemed not only dangerous but simply wrong.

Ancillary activities at Bargoed

Powell Duffryn�s coke ovens and by-product recovery plant at Bargoed were a fine example of colliery enterprise. The company used some innovative methods to fully utilise the by-products of the raised coal. This included washing small coal, coking in re-generative by-products ovens, the manufacture of sulphuric acid and sulphate of ammonia and tar distillation. There was also a benzol plant and an ammonia plant. Some of the coal by-products produced were presotim (a wood preservative), presomet (a black bituminous paint for metals) and syntharar and synthacold (tar products for road services).

In 1934 the company set up a research laboratory to devise new processes for increasing the efficiency of carbonising, distillation and coal cleaning. In 1939 a new tar distillation plant at Caerphilly was opened to distil all the tar produced by the company, and also tar produced by all of the steel companies in South Wales which had coke ovens.

There are many files  of correspondence (1917-1951) of Joseph West who was manager of Bargoed Laboratory, then later kept on by the National Coal Board as Carbonisation Officer for No 5 (South Wales) Area. The files include analysis of coal and its by-products, details of coke production and shipments, correspondence specific to certain chemical processes, the ammonia plant, and gasholders and purification. The collection also includes goods outwards books (1925-1951) and would make an excellent resource for historians interested in the ancillary activities of the coal mining industry.

Parenting and Disability: The Final Frontier?

Last year I delivered a paper at Union College at a conference entitled Disability and Ethics through the Life Cycle: Cases Controversies & Finding Common Ground. My paper was about being a parent with a disability. I dragged my son to this conference. I did this for two reasons. First, he was about to graduate from high-school and would be heading off to college in the Fall. I wanted him to see how scholars interacted at a conference. Second, I wanted him to see me in action about a subject, disability rights, that I am passionate about. We had a good time though he was understandably bored at times. Fast forward to last week. I completed a revised and expanded version of my paper for publication. I spoke to my son about my paper, our experience, and how slowly things grind along in academic publishing. He expressed a modicum of interest as he considered the issue already resolved. The paper was delivered, revised copy submitted, and it was time to move on. The sub text was, come on, Dad, this is boring when he suddenly said �Dad, there is only one thing that bothers me about you being disabled�. Oh no, I thought! Where have I gone wrong and how badly have I screwed him up. I said go ahead and tell me. He replied, �Dad, every chair and couch in our house is uncomfortable and you don�t give a shit.� I replied �Guilty as charged!�

I was tremendously relieved by my son�s comment. In the back of my mind I have always had one worry: would my disability have a negative impact on my son? I think his sole complaint, a valid one I may add, is an indication I did many things right. In short I am proud of myself and my parenting skills. Aside from my pride in the way my son has grown and matured, I look back and know it was not easy. I know only one other paralyzed parent. She is much younger than I am with a kinder garden aged daughter. Based on our conversations, she is not encountering many of the problems I had when my son was a little boy. This is heartening to me. But some things have not changed. First, ever present amazement that a paralyzed person can be a parent. Second, explicit and grossly inappropriate questioning by health care providers that assumes a parent with a disability is not competent. Third, social exclusion of children that extends disability based prejudice. Fourth, exclusionary practices in secondary schools and private organizations that inhibit the ability of a parent with a disability to be actively involved in their child�s life.

The four variables above have been foremost on my mind because of a recent court case. Here I refer to Abbie Dorn who gave birth to triplets in 2006. Complications during the births led to severe blood loss and Dorn�s brain being deprived of oxygen. The result was severe brain damage. There is no agreement on the degree to which Abbie Dorn is aware or able to communicate. A year after the triplets births Dorn�s husband divorced her and moved with the children from South Carolina to Los Angeles, California. The case to me is about two things: first, a bitter fight between the father and Abbie Dorn�s parents. Second, the rights of all parents with what is perceived to be a profound disability. The mainstream media has jumped all over this story. Stories have appeared on ABC national news, AP, New York Times, LA Times and many other news outlets. All focus on the classic tragic nature of the case. Abbie Dorn�s parents maintain their daughter has the right to see her children on a regular basis. The father, in contrast, thinks his children will be emotionally traumatized by seeing their severely disabled mother. The case went to court where after a two week hearing the judge ruled the mother had temporary visitation rights. She will be allowed to see her children three hours a day for five straight days each year in her parents home with the father�s supervision. The mother is also allowed a 30-minute monthly videoconference with her children.

The attorneys for both mother and father are thrilled. Abbie Dorn�s lawyer said the ruling was astounding and a precedent setting victory for all disabled parents. The father�s lawyer was thrilled because the visits will be minimal and supervised. I see no victors in this case. I see nothing that can be construed as a victory for all parents with a disability. Of one thing I am sure: there is a deep division bordering on hatred between the father and Abbie Dorn�s mother Susan Cohen. If there are any victims in the case it is the children who are caught in the cross fire between adults that cannot put aside their differences and put the children�s best interests ahead of their own. There is however a subtext to the discussion of the Dorn case. This subtext is never articulated because there is no doubt Dorn cannot physically care for her children. This is not in dispute. The more general subtext is far more complex: are people with a disability capable parents? The social assumption is no, people with a disability are unfit parents. I know this is the case because I was repeatedly discriminated against as a parent with a disability. My fitness and ability as a parent was always questioned. People were not subtle: health care professionals I met in the emergency room where I took my son when he needed stitches questioned whether I was my son�s legal guardian and asked if I had documents to prove it. I doubt any father walking in the door of an emergency room would be asked the same question.

For years I would tease my friends that the bathroom represented the final frontier in terms of disability rights. Sure I could get in the door but precious few bathrooms were ever accessible. Over time I have had to stop using this line�too many bathrooms are now accessible. I suspect that final frontier may now be the right to be an ordinary parent. By ordinary, I mean �normal�. Normal here meaning physical access and social acceptance at schools and all other organizations associated with youth development. Normalcy is something I never experienced raising my son. Does this sound like sour grapes? In part yes. But my son learned some hard lessons about discrimination other kids read about in books. The discrimination I faced and by extension what he experienced as well made him a more understanding person. He understands discrimination in a visceral way. He directly relates to civil rights movements of all oppressed groups. I wish he did not have this first hand knowledge but I look for the positive elements. And his complaint about my furniture is a sure sign he was in no way negatively impacted. Kids I have learned are amazingly adaptable. No kid has ever discriminated against me. Such bias is learned behavior. They learn how to be afraid or discriminate from their parents. I see this lesson being taught all the time. For instance when I go to the grocery store parents inevitably grab their kids hand and state, �watch out for that man in the wheelchair�. The message sent to the child is clear: people with a disability are dangerous, they have a tainted social identity. Now this is something I would like to see discussed. Rather than the tragic elements associated with disability. For I see no tragedy in disability just a group of diverse humans.

Steamer Industries Maxle Kit

Maxle Kit

Had a friend over recently with a maxle in rag order, came up with this simple solution.


No more faffing about with stupid dodgy maxles with this on your bike. Lighter, stronger, simple and  effective.


Made from 6082 T6 aluminium and uses a polymer washer so as not to damage your fork lower and is SUPER light

Sits flush and looks clean ( only available in Ireland.)


Maxle Kits are a perfect solution to fixing a broken maxle or to end the hassle with the complicated system in place at the moment. Not just a fix but also an upgrade! 


Kits range from � 20 including fitting. New maxles cost up to 80 euro, why bother when you can fix or upgrade at Steamer Industries. 


Anyone intrested contact Kev at 


Contact me at Kevin@watermarkeng.ie or  +353 851331104 

Sports Imagery: A Damaging Article

I follow two sports closely--hockey and baseball. I love hockey and have a nostalgic interest in baseball. For me, money has ruined baseball. The players make so much money I find it offensive. I also object to the cost of attending a baseball game. Last year I went to Citifield where the NY Mets play--it cost me $200 to walk through the gate. I did not have great seats, just good seats. Sure I had fun but come on. $200 to see a ball game.

Baseball has history and a connection to American culture that is unique. To understand baseball one must understand Americans. The sport reflects our culture. Given this I find all sorts of meaning in baseball writing. I thus read far more about baseball than I ever watch. Yesterday I was reading about a San Diego player I had never heard of, David Newhan. Few people have heard of him because he is a journeyman, one of the many faceless ball players that populate the game. So why am I writing about this man? There was an article in Yahoo Sports The Post Game--"Old Ball Player, New Soul". Apparently Newhan broke his neck in a surfing accident. He was not paralyzed but came very close to being a high level quad. This is a good hook for any article but especially about an unknown baseball player. What shocked me however was the introduction to the article. It was gripping in all the wrong ways. Judge for yourself. Here is the opening:

"It was a simple act. David Newhan held open a restaurant door for a person in a wheelchair. And yet he was overcome by emotion. Gratitude gave way to longing, longing gave way to resolve, resolve circled back to gratitude, and then he wanted nothing more than to find the nearest ballfield, crush a fastball and dash around the bases.
As the wheelchair rolled past, Newhan silently thanked God for his own miraculous luck."

Let me see: I can open my own door thank you very much. I am also a human being. I am not "the wheelchair" that rolled past. How dehumanizing. Here is the blunt message: using a wheelchair is horrible, a tragedy. You do not see a human using a wheelchair you only see the wheelchair, the symbol of all that can go wrong. What are we expected to feel? Why pity of course. Pity the poor bastard that is confined to a wheelchair. This sort of dehumanization makes me furious. How can I ever expect to be treated equally when such destructive sentiments are expressed. Here is what I thought could have been written instead. The player in question takes an interest in disability rights and advocates for people who were not so lucky to avoid a paralyzing injury. This man in his spare time and from his privileged position helps people with disabilities attend or participate in adaptive baseball. Now that article would be worth reading and send a good message. But we rarely if ever see such an article. Charity sells papers. Tugging at people's heart strings gets people to read. Who wants to write about civil rights of people with disabilities. No major newspaper I ever read does this. This void can be overcome but we need people with disabilities to be writers, editors, or employed in some way throughout each section of American society. Without this I do not see an end to the dehumanized status of people with a disability in American society. Not a happy sentiment for sure but accurate.

Wheelchair Industry: Quality Absent

I opted out of dealing with wheelchair companies 25 years ago. This was an easy decision to make. Manual wheelchairs as most readers are likely to know are costly--easily exceeding $3,000. What does one get for this money? Not much. I think the vast majority of wheelchairs manufactured today are poorly designed and contain inferior parts, especially things you do not see like wheel bearings. No mass produced wheelchair can withstand the rigors of every day use. Worse yet, the services wheelchair companies provide is laughable. Durable medical equipment vendors provide dismal service at best. Do not believe a word RESNA, Rehabilitative Engineering and Assistive Technology Society of America, states about so called seating specialists. There is a shocking lack of competent people who can help consumers pick out an appropriate wheelchair. To be fair, I would include specialists in rehabilitation such as occupational and physical therapists among those that do not possess adequate knowledge. Getting the right wheelchair is extremely difficult. Mistakes are costly and here I am not just referring to the financial implications. An inappropriate wheelchair can result in a myriad of health related problems. Specialists can be found--most likely at larger rehab centers but I have never found one myself. I will acknowledge some people are well versed in wheelchair technology and have the experience of working with an array of people that need a wheelchair. Sadly, most people who have a spinal cord injury do not have access to these professionals. Adding to the problem is the fact the sort of comprehensive long-term rehab I experienced in the late 1970s is a thing of the past. Sure wheelchair technology and medical care have undergone a revolution since I was in rehab but there are disturbing aspects to the wheelchair industry and modern day rehab. Frankly, most people leaving rehab centers today are grossly unprepared to care for their bodies and the social response to their newly disabled bodies.

These thoughts have been coursing through my brain after reading a wonderful article in Sports N Spokes: "Chair Shake-Up" by Rory A Cooper and Rosemarie Cooper. This is a highly unusual article for the magazine to publish. It is filled with insightful observations and contains a social critique. Do not misunderstand my comment as a cheap shot at Sports N Spokes�it remains the best magazine published about adaptive sports. What separated this article from others is the critique of the wheelchair industry. This critique takes place at a critical juncture in time: the demise of high-end wheelchairs. This is an alarming phenomenon even if it does not directly affect me.

In 2010 Invacare and Sunrise Medical, the biggest manufacturers in the business, each stopped producing most of their titanium wheelchairs. They now make a plethora of crappy, i.e. cheap, wheelchairs that can be bought at a discount on line at sites such as SpinLife.com. The dearth of high-end wheelchairs however is symbolic of a larger problem--people who use a wheelchair are simply not valued. By high-end wheelchair I am referring to a wheelchair that is lightweight and tough--one designed to last a decade or more under rigorous everyday use. The rigorous use I am thinking involves extremes of weather and terrain as well the ability to absorb the abuse dished out by airlines and the constant assembly and disassembly required to get in and out of the car. Such a wheelchair has high quality wheels, rims, hubs, and a top-notch paint job (powder coating). Most mass produced wheelchairs will crumble under such use.

How do I test a wheelchair? I take the frame and throw it out a third or fourth story window. If the frame survives it is good to go. I sincerely doubt any wheelchair made by the mega conglomerate Sunrise Medical can withstand my quality test. This is a huge problem. What I wonder does a young male or female 20 years old with a spinal cord injury do? We guys, and yes gals, who use wheelchairs our entire life depend upon our wheelchairs. When they stop we stop. By extension, this has me wondering how do newly paralyzed people learn to cope with a spinal cord injury? When I was injured I learned far more from my paralyzed peers than I ever did from the doctors, nurses, and therapists charged with my care and supposed rehabilitation. Hence when I went to college fresh out of rehab the best education I got in terms of how to cope with the real world came from my peers.

Paralyzed people today do not get much time in rehabilitation. When I was paralyzed rehab stints of 6-9 months were common. Today, if you are lucky you get three weeks. No one in the olden days was sent home until they had their own wheelchair. When that wheelchair arrived it was a glorious day! Today, people are routinely sent home with a loaner wheelchair, a total piece of junk. They struggle as a result. The vast majority end up back in the hospital. Is this progress? Well no. This is done at the behest of insurance companies and affects not just people with spinal cord injury but a host of people foremost among them the elderly. I can only conclude our existence is not deemed important. You get a few weeks of rehab and if you do not progress it is off to the nursing home. Indeed, the average age for people admitted to nursing homes is now dropping. And who ends up there? People with spinal cord injuries. Do they get proper rehab? Not a chance. They are warehoused and unlikely to ever emerge from the institution they are sent to.

I mourn for my newly crippled peers. They are not given a fighting chance to succeed. In fact, they are set up to fail. How can a newly paralyzed person succeed with a crappy loaner wheelchair and three weeks of rehab? How can they learn how to manage their bodies without talking to those that learned to adapt long ago? The answer is they cannot. I learned how to manage my bladder and bowels by talking to other paralyzed guys. I did not learn one practical thing in the hospital. What I found in the hospital and subsequently in college was camaraderie. I learned much from peers and we were part of the pre ADA generation that had no civil rights and in its absence railed against prejudice. Not all of us succeeded but we all had a fair chance. That is all I want for paralyzed people today�a chance, a legitimate chance.

The only way paralyzed people can function is with top-notch wheelchairs. I was very lucky in that I was paralyzed at a time when wheelchair innovation was actually taking place. The monopoly that Everest & Jennings enjoyed for decades was broken in the late 1970s. For the first time in history paralyzed people were given a real choice when it came to wheelchairs. From this void emerged rigid frame wheelchairs that dominate the market to this day. What I am waiting and hoping for is another such revolution in choices. I do not see that happening though. Instead the wheelchair market is taking a giant step backward�pun intended. Wheelchairs are not designed for rigorous use but to the dictates of insurance carriers. Those insurance carriers do not care one iota about the quality of life of people that use wheelchairs. I care and am very sad. I figured a way around the practical problems of inferior designs and lousy service. My solution though is a solution for one�me. This bothers me for I worry. How do my paralyzed peers can function when restricted by insurance carriers and a lack of top quality choice? This is an issue that must be addressed at the highest levels of industry and government. We paralyzed people need access to not only quality wheelchairs but also technological innovations. Without it we are doomed to fail. I for one do not accept this reality.

Southerndownhill Review

Big thanks to Matt Wrag for posting up this review on the Southern Downhill.

Great description and photos, awesome to see so many people stoked on this product proceeds going towards funding first season in Elites and a another season of testing and prototypes.

Cheers K_DOG

Mount Kit Guide

http://www.tftunedshox.com/MountKitGuide.aspx

Follow the link to see what size bushing will fit your bike, include the size while ordering to make things easier for me and yourself. Follow the simple instructions provided in the Mount Kit guide

Thanks KC

Filming with Through The Roots

Recently the usual heads and I had the chance to do some filming with students producing a film about mountainbiking in Ireland. We rode in Carrick and Djouce Woods.


Weekend in the mountains on pinkbike.com


The crew will be posting updates throughout the filming via their facebook page.
http://www.facebook.com/pages/Through-The-Roots/144456078943301

12/03/2011



Djouce/Carrick
Wicklow, IRE

Rider	Bike	HA	BB
Kevin Coughlan	DHR Square	63�	13.4	Y	Y
Gavin Kelly	DHR Round	63.5�	13.6	Y	Y
Eoin �'Siochr�	Sunday	64�	13.5	Y	Y
Nigel Glynn	Session	65�	14.3			Y
Stephen Mellon	Sunday	63.5�	13.5	Y	Y

moar �

More soon KC.

Dirt Magazine Website Feature- Steamer Industries

http://dirt.mpora.com/news/slacken-head-angle.html

Yesterday I was on the phone to Steve Jones from Dirt Magazine talking about my Offset Bushings. Luckily I now have a feature on the DIRT Website and orders have rocketed. Read the article on the website (follow the link above to get a real insight to the bushings, how they work and how they are made.

KC.

A Night with Steamer Industries

Pictures a friend took one night I was at work on the offsetters for a mates Ironhorse Sunday http://classyas.wordpress.com/2011/02/11/a-night-in-steamer-industries/

NYT Grim Reading about the Margins of Citizenship

On March 12 the New York Times published a long article that reminded why the paper is read nationwide. Once in a while the NY Times publishes outstanding articles. Yesterday had one of those outstanding examples of first rate journalism. Here I refer to a long article by Danny Hakin, "At State-Run Homes, Abuse and Impunity". No new ground was broken in the article but it was shocking and gripping reading. A New York Time investigation over the past year revealed what many do not want to know much less acknowledge: there is wide spread abuse at group homes run by the State of New York. What sort of abuse? Residents of groups homes have been raped, beaten, taunted, and physically abused. The abusers are rarely if ever convicted of the abuse. State records show that of the 13,000 allegations of abuse in 2009 at state operated group homes fewer than 5% were ever referred to law enforcement. The people being abused are the most vulnerable--men and women with Down Syndrome, Autism, and cerebral palsy. Not much has changed since 1972 when Gerlado Rivera made a name for himself by filming the horrific conditions at Willowbrook Institution. The images were searing. A nationwide scandal resulted and the forced institutionalization of people with a host of disabilities slowly came to an end. In its place of large institutions that warehoused hundreds of people we now have a complex and diverse distributions of small group homes. To me, these are nothing more and nothing less than mini institutions. I am not convinced such group homes are better than the closed institutions that dot the rural landscape of New York. The abuse of large numbers of individuals housed in institutions has ended. In its place small scale and widely spread abuse exists.

I urge readers to look at the NY TImes article. It is grim reading. It should make one angry--deeply angry that those least able to protect themselves are being abused. The abuses are nothing short of horrific. It makes one question humanity. It also made me upset we as Americans have never really had a national dialogue about how to care for people with profound cognitive and physical deficits. If the article in question posses more than a grain of truth we as a society are failing--a failure that dates back a century or more. When I read the story I was moved to tears. How can people abuse others and live with themselves. It is nothing short of evil. But evil lurks in the hearts of many. To counteract such evil we need to openly discuss how we should care for people who cannot care for themselves. I would argue our society has the moral responsibility to do this. I have little faith the courts or politicians can do anything to ameliorate the situation unless a great number of citizens all rise in protest. I do not see this happening either. Why am I so pessimistic? I have read too much about ugly laws, institutionalization, legal abuses, and cases such as Buck v Bell. When I read the story my first thought was that in a horrible way the article highlights much of what Allison C. Carey wrote in her insightful and important book On the Margins of Citizenship. People with cognitive disabilities have historically been marginalized and excluded. Segregation remains the norm for children and adults with profound cognitive and physical impairment. Sure we have group homes in communities but that does not mean the residents are welcome. I live near two group homes and I have seen these people escorted to the local super market in a van. Sadly but hardly a shock to me, the supermarket empties out in world record time when group home residents appear. There is no effort to hide the bias or distinct and palatable level of discomfort. This is an indictment on us not the residents. These people inalienable civil rights are violated on a regular basis. So I reiterate, not much has changed since 1972. But I would go farther, not much has changed since 1927and the notorious Buck v Bell decision written by none other than the widely praised jurist Oliver Wendell Holmes. The denial of Carrie Buck's rights are a low point int he history of jurisprudence. Holmes gave support to the state's authority to deny the most basic civil rights including the rights of privacy, parenthood, and bodily integrity to people with cognitive disabilities. The frightening decision is worth re-reading and in part Holmes wrote:

We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for the lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or let them starve for imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes... Three generations of imbeciles are enough.

While shocking to read in retrospect, are we really doing a better job caring for people with cognitive and physical disabilities today? I would argue the NY Times article provided a lurid and resounding no. I frankly cannot stomach the details provided by the NY Times. It is just too horrible for me to contemplate. Instead I rail against American society that tolerates such abuse and has done so for decades. The violation of the basic rights of a group of people is unacceptable. All agree with this sentiment but I do not see measurable social change. We need to understand such marginalization and consequent abuse has not substantially changed since 1927. In every era ideas about people with profound cognitive and physical disabilities have been put forth, solutions offered and changes made. But none of this gets to the core issue: that these people have inalienable rights that must be respected. Any discussion must be framed within this larger context.

Cure for SCI and Being a Bad or Good Cripple

Many people do not get why I think of myself as being a bad cripple. The moniker I have used is a puzzle. I always hear the refrain "but you are such a pleasant person". I am indeed a mild mannered though a bit intense person. Although it is impossible to ever really know, I would argue I am easy to be around. I truly value stability in personal relationships and in my life as a whole. Hence when my niece who is extremely disability aware hears me use the phrase bad cripple she cringes. I am a bad cripple because I am violating certain social norms. People with a disability you see are supposed to be miserable. We are expected to be constantly seeking out a cure. We should be spending all our time working toward this goal with various doctors and rehabilitation centers. These doctors are supposed to be brilliant, devoted to helping the less fortunate. The more exotic and innovative the cure the better we people with disabilities are perceived to be. Hence if you want to raise money and go to China for dubious stem cell treatment you will be lauded for your efforts. The risk involved and the long odds to success in terms of cure are not relevant. You are doing your best, searching out every possible cure and damn the risk you are going for it. You are a hero! Think Christopher Reeve as the archetype the media and society lauds--he was the classic good cripple. Who is the is the archetype of the bad cripple? People like me that express no interest whatsoever in cure. I am not against cure for spinal cord injury. Read that sentence again please. Such research is important and worthwhile. I support the efforts of researchers assuming they do not use images and notions of pity to raise money. At a personal level however, I find such research irrelevant to my life. Why undergo treatment that has no track record, the long term implications unknown, and results iffy at best. I am quite content with my crippled body. I like my body. Would I prefer not to be paralyzed? Of course. But I would also like to be stunningly handsome and am not. The simple fact is there is nothing i cannot do that a person who walks can do. Paralysis has not stopped me from getting an outstanding education, publishing my work, teaching, getting married (and divorced), fathering a child etc. All these ordinary experiences are thought to be out of the realm of people with a disability. Hence it is not paralysis that has been the bane of my existence but the way people react to my paralysis and wheelchair use.

I think we as American are more comfortable with the good cripple. The good cripple wants nothing more than to overcome his or her disability. The good cripple accepts that the normal body, the bipedal human body, is the cultural ideal. The good cripple accepts a socially inferior position in society, happy for a hand out and all too willing to exploit their diminished social status. Need to raise money? Just get up on stage and say I want to walk again. People will cheer your efforts and write check. Enter me, the bad cripple. I am, please brace yourself, happy. Oh, the nerve! Worse yet I do not have an interest in a cure for spinal cord injury. What do I expect? To be treated as a sentient being. I consider myself to be equal to my bipedal peers. This is a social afront. Why imagine the nerve? I expect the country to be accessible. When I confront needless architectural and social barriers I get angry. I have rights and I assert them. This makes me about as popular as Oliver Perez among NY Mets fans. No one wants to confront an angry cripple. He should be happy for society largesse. He should be pining away for a cure. He should not be upset we the almighty and powerful bipedal humans forget to include access. We are ever so sorry. Come back another day and if we deem it worthwhile we will make our facility accessible. My reaction is blunt: screw you. You are breaking the law and an old one at that. I do not want a hand our or charity, I want to be treated with equality and respect. Many do not know how to react to this firm assertion of my inalienable civil rights. The travel industry, in particular mass transportation, seems the most oblivious to disability rights.

What I find perplexing is why? Why are disability rights perceived to be different, vastly different to all other important civil rights we as Americans value. Separate in terms of race and education is a given. All are taught about Brown vs. the Board of Education Supreme Court decision. It is the bedrock of our public education school system. But how come separate is acceptable when it comes to transporting and educating children with a disability? I saw gross violations of the ADA at the public school my son attended, violations that impeded my ability to be an active and involved parent.

In one of my favorite memoirs written by a person with a disability Stephen Kuusisto's Planet of the Blind he wrote that "on the planet of the blind no one needs to be cured". Wow! Wow, not because of the beautiful prose but rather the affirmation of the civil rights of blind people and by extension all others with a disability. Kuusisto made this same point in a post at his blog Planet of the Blind yesterday. The post in question, Project 3000 and Post -Molecular Medicine at the University of Iowa's Institute for Vision Research, discussed cure, the medical model of disability, disability rights, and the care cure divide. He closed this post with a quote from his colleague Edwin Stone.

�Blind people need to go to the eye doctor for general ophthalmological care�blind eyes are still important eyes.
One day Ed said to me:
The evangelical disabled person might adopt the attitude, �Why do I need to be cured? I�m fine as I am,� while the evangelical curing person might adopt the posture, �Why spend any resources on figuring out ways to accommodate visually disabled people? We ought to spend time trying to cure them,�� �It�s grossly inappropriate that these two concepts are so separate. There�s no reason we can�t pursue both�aspire to reduce blindness through surgical or medical treatments, while simultaneously being sensitive to the needs of people who are visually impaired and working to help them in every way possible.�

Amen, care and cure are not mutually exclusive. Kuusisto thinks this is taking place in ophthalmological care. I do not doubt his assessment. However, I would contend such a nuanced view has not extended beyond this field and is far from being accepted in the medical industrial complex. For people with a disability to be accepted as equals the medical model of disability must be rejected and a far more nuanced understanding of physical difference must be accepted. I do not see this happening any time soon when it comes to spinal cord injury. Kuusisto thinks this revolution is underway. Sorry but I disagree. I disagree because i have had way too much contact with the medical industrial complex lately from wound care to urological surgery. One theme, a constant, has been a gross lack of physical access and a social understanding of the nature of disability. Some of the problems are purely medical but the vast majority of obstacles are social. Simply put, access in the broadest sense of the term is not valued or desired. Much money is spent on what I call window dressing--what people with no experience or knowledge of disability think is important. Hence we get lots of electric door openers and a multitude of accessible bathrooms all located in the wrong place. Why are such errors made? Again, simple: not enough people with a disability are woven into the fabric of society. We have no voice when decisions are being made that impact us directly. This is a problem that will take many more decades to rectify.

Weighing in on Space

When people, okay when women, visit my home I am made to feel as though I have failed home decorating 101. These unnamed women are always polite and diplomatic. They will will inevitably compliment my house as being tasteful, neat and clean but there is always a pause. This pause is followed by statements such as my home lacks a "woman's touch", the absence of window treatments, drapes or some other fashion failure. I don't mind this one bit. No woman lives in my house and it does lack a feminine touch. I am not exactly surely what that feminine touch means in terms of how a home looks but its absence is apparent. I must confess however I do not like living in my living room. I have what can only be deemed an ugly clinitron bed in my living room. On my very nice leather couch I have my medical dressings spread out. All the furniture is out of place and at night I wish my house and body would return to normal.

As I feel asleep last night I was truly bothered the way my house has been rearranged while healing from my wound. But as I began to feel sorry for myself I thought--knock it off. I am lucky to be in my home. A mantra I often repeat. So why did my temporary living arrangement bother me? The answer came to me this morning reading Tobin Siebers book Disability Aesthetics. Siebers attempts to redefine both disability and aesthetics. While much of the book was not to my taste in part because Siebers looks at much art which I have little interest in. One small section of Siebers book did hit home--here I refer to the section on "Hysterical Architecture". I have often been struck at how violently people react to accessible space. I have heard again and again how access and durable medical equipment is ugly. I have heard heated arguments about how access "mars" a building or is an "eye sore". It dawned on me that while i obviously reject such beliefs I have nonetheless incorporated them in my thinking. When I renovated my house I did not want the ramp to my home to be too visible. I did not want my bathroom to look like too medical even if it meant being inconvenienced. Part of this concern was financial. To sell a house it must look aesthetically pleasing. Access I have learned is rarely if ever aesthetically pleasing. What has struck me as an obvious problem is that access is "ugly", an "eyesore" because we do not value said access. Access when constructing a building always appears to be an after thought--something that must be forced into an already beautiful design because of the law. And we know many hate the law, especially the ADA. That pesky law bankrupts small business and costs schools a fortune.

Given the above I was struck by Siebers following observation:

It is as if the public interprets ramps, accessible doors, and signage for the disabled as symbols of disability that require a mustering of defense mechanisms. In no time, plants and flowers clutter wheelchair ramps, handicap signs are tucked away, and decorative rocks and wood chips block accessible walkways. Nature abhors a vacuum, and society treats handicapped parking spaces and accessible pathways as empty paces to fill: locales marked by accessibility inevitably become handy collecting points for trash, building materials, or delivery trucks (pp. 79).

Society is indeed very defensive. It is as though the mere presence of accessible entrances is an afront to the delicate sensibilities of society. The presence of the disabled body and hence access for that body is unwanted. Every person I know with a disability can relate to the Seibers quote above. We have all had experiences where the space for us has been violated. Trash in wheelchair lifts are a common problem. Snow plows dump snow in handicap parking. Delivery trucks block curb cuts and fill up handicap parking spaces. Handicapped seating is used to store extra chairs and supplies. Signs if present are obscure and often grossly wrong. The list of violations is seemingly endless to me. Indeed, violations in terms of equal access are the norm. When traveling I always assume problems will arise and sadly I am almost always correct. What all these seemingly minor violations indicate is that we people with a disability are not valued nor welcome. We are ugly, a reminder of all that can wrong, a tragedy even. I am not sure how to change this societal mindset when even I am guilty of incorporating it. I will thus cut myself some slack knowing that my wound will heal and my ugly bed will find its way into its proper place--my bedroom. So for now I remind myself to be content with my existence even if it does not exactly please me.

Conference Day

Yesterday I attended and presented a paper at the 13th Annual Women's History Conference at Sarah Lawrence College. The title of the conference was Breaking Boundaries: Body Politics & the Dynamics of Difference. I am not drawn to academic conferences like I was earlier in my career. I now go to few conferences and only those that are of particular interest. The Sarah Lawrence conference was of great interest to me as the subject matter was of interest and it would not be anything like overwhelming national meetings of anthropologist. The fact it was close to home added to its appeal. I also hoped to meet Susan M. Schweik author of the Ugly Laws. In my estimation Schweik's work is critically important to a little known subject--ugly laws that swept the nation and profoundly affected people with disabilities. I heard a number of very good presentations and overall the conference was well worth my time. It reminded me how much I miss interacting within the academic arena.

My paper was about my experiences as a wound care patient and an adaptive skier. Below is my paper.

�Disabled and Proud� and �Piss on Pity� are two popular slogans used by disability rights activists. These words in my estimation fail to resonate with the general public thereby highlighting the divide between those with and those without a disability is as profound today as it was 20 years ago when the Americans with Disability Act was passed. While the law is now firmly on the side of people with disabilities, disability rights is not valued or equated with other important civil rights legislation. This great cultural divide leaves us with stereotypical images and notions�the person with a disability as a tragic figure or conversely the �super crip�, a person that overcomes a given physical deficit. Another level of complexity exists within academia where two opposing theoretical constructs dominate discourse about disability. Here I refer to the medical model of disability versus the social model of disability.
Despite fundamental flaws, I have come to accept the social model of disability because it reflect my belief that disability is primarily a social problem. This is a minority viewpoint. The average American has been taught overtly and subtly that disability is bad, a tragedy even. Doctors on the other hand perceive disability as nothing more and nothing les than a physical deficit. No consideration is given to the social implications of disability, its cost, or the gross lack of access within medical facilities. Of course there are multiple exceptions to the general observations I have made. The point I am trying to stress is that given the general cultural perception of disability one would expect acute care hospitals to be an amenable environment for a person with a disability. In contrast one would expect the sporting arena, one that places great emphasis on physical ability would be hostile to the inclusion of people with a disability. I contend the exact opposite is true.
Based on my experience as a person with a disability and a parent, I have learned to fear not only doctors but hospitals. As a parent with a disability, many health care professionals assume I cannot rear a child. To be blunt, I am not parental material in their estimation. I am fearful of critical care hospitals because there is no doubt I am perceived to be an expensive, complicated, and time consuming patient�one most likely to have poor insurance and lack a basic education. Sadly these assumptions are often true. No minority population in the United Sates is as disenfranchised as people with a disability or shut out of accessing adequate health insurance. In short, acute care hospitals present a hostile social environment dominated by many architectural barriers. In contrast, I have found adaptive sport program especially those associated with skiing and kayaking to be not only welcoming but present few if any architectural barriers. This phenomenon is fascinating to me in part because it is contrary to accepted cultural beliefs.
My views are based on my own experiences as an adaptive skier and kayaker and most recently as an in and out patient at a critical care facility. In September 2010 I discovered a stage four pressure sore, the most severe wound possible. The wound was grossly infected and I had MERSA, a potentially lethal anti-biotic resistant infection. Within days of hospitalization I experienced not one but two extremely bloody debridements and required multiple blood transfusions. Frankly, I was deeply embarrassed by my wound. I knew such wounds are serious and can be life threatening. I have successfully avoided such wounds for 32 years, a rarity among paralyzed people who are often plagued by pressure sores. I was na�ve enough to be obnoxious in my success at maintaining my skin integrity. I mistakenly believed I was smarter than other paralyzed people. In the last six months I have learned I am not one iota different from other paralyzed people. What separated me was access to first class medical treatment and an excellent education.
What struck me upon admission in the fall was the stunning lack of knowledge on the part of those charged with my care. I felt like a human science project�a rare species that descended upon the hospital. The focus was not on getting me better but rather what sort of �special needs� had to be met. The subtext to the question about �special needs� quickly became apparent�how much extra labor would I require. Worse yet, I had a self inflicted wound that was easily preventable�not my words but those of the examining physician. I was what doctors refer to as �gp rubbish�. Recovering from a stage 4 wound is a long, slow, and agonizing experience. I spent three weeks in the hospital and when medically stable was given 48 hours to either transfer to nursing home or purchase a clinitron bed and arrange around the clock care�neither the bed nor round the clock care was covered by insurance. For once in my life I was grateful to come from a large Irish catholic family. I would not be able to sit up for at least 3 to 4 months and I quickly arranged to have my siblings meet my basic needs. Insurance would cover wound care but nothing else.
Wound care is a unique world. A dizzy array of people need wound care. Elderly people, people with cancer, the terminally ill, people who had major surgery, people who shattered bones, and at the bottom of this list are people like me. We are the least desirable patients. Our wounds take far longer to heal and require careful monitoring. We also require physical access. Access I can assure you is not solved by plastering little blue wheelchair logos all over the place. Instead it requires not only physical access but use of high priced technology such as wound vacuums and clinitron beds. We thus require a significant financial investment. Hospitals are loath to spend such money�even wealthy suburban hospitals. As a result, hospitals do not own much of the equipment needed. They rent the clinitron beds and wound vacuums. Admission and treatment becomes complex, placement in a hospital difficult at best. Extended waits are common and people suffer as a result. For instance when I needed a clinitron bed it took the hospital 24 hours to locate such a bed and have it delivered. Upon delivery no one knew how to use the bed or turn it on. I shuddered to think what would happen if the bed broke.
As one who spent a decade in the 1970s on neurological wards in the pre technological era, I am amazed at the technological advances in medicine, foremost among them wound care. My severe wound without a wound vacuum would take one year to 18 months to heal. With a wound vacuum it is almost healed in six months. This is remarkable technology as is a clinitron bed that enables one to be in one position 24 hours a day for weeks at a time and not have a skin breakdown. These technological marvels come at a price�they are costly in the extreme and beyond the means of too many people. My wound has taught me many things about this technology and what one bioethicist has labeled �taming the beast�. The beast, technology determines care, the human component is not valued. In the six months I have spent healing I learned much about dependence, social isolation, economic marginalization, and a caste system in medical care.
This is all a far cry from my experience as an adaptive skier and kayaker. Adaptive athletes provide great fodder for the media. Visuals usually involve a profoundly disabled athlete doing something miraculous. What is celebrated is not the athletic or personal achievement but rather the ability of the disabled person to overcome a physical deficit. The more profound the disability the better the story. The negative portrayal of disabled people is not only oppressive but also reaffirms that nondisabled people set the terms of the debate about the meaning of disability. The antiquated images of disability resonate with the general public and reinforce economic, political and social oppression experienced by people with disabilities. In terms of sports, it is assumed that a physical or cognitive deficit precludes not just an interest in sports but the ability to participate. What most fail to realize is that the dichotomy between disabled and nondisabled is a fallacy. Life is simply not that definitive.
My wheelchair is the ultimate symbol of disability, a message that ski resorts and people that ski seemingly did not get. I am relatively new to skiing in large part because I am a direct beneficiary of a technological revolution in adaptive sports equipment. Adaptive skiing started in the late 1970s but did not become user friendly until the mid to late 1990s. The gear, or rigs as they are called, are akin to Ferraris. There is no slope a paralyzed person cannot ski. The elite of these skiers are the men and women seen on the X Games. But I am far from an elite athlete. I am your classic weekend warrior. I am content to go up the lift and ski down the intermediate trails at my own pace�and I will admit I have one speed, fast. For me, this is an accomplishment�an ordinary accomplishment I share with bipedal skiers. I have put much thought into why I enjoy skiing. Sure the activity itself is fun and the views from the top of a mountain magnificent. But I quickly realized when I skied no one cared one iota that I was a sit skier. The focus of all my conversations was about skiing: we discussed the snow, slope conditions, how fast did I ski and which trails were in the best. No one has ever asked me why I use wheelchair or anything about the nature of my disability.
The complete lack of interest in the nature and cause of my disability is unique and fascinating. Why, I wonder, does it seem as though skiers have no interest whatsoever in my disability. I am not alone in wondering about this. I have spoken and interviewed many adaptive skiers and their respective spouses and children. In addition, I have interviewed adaptive sports program coordinators at resorts throughout New England. All report the same thing: one�s disability is not socially significant on a ski slope. Exceptions do exist however. Some mountains do not want adaptive skiers. Adaptive programs are utterly absent at some resorts and adaptive skiers report they have encountered stiff resistance to their existence. This is quite unusual and appears limited to elite resorts. The result is a network of information willingly shared among adaptive athletes. Adaptive programs are hooked into this network of information and base their programs at resorts that are open and welcoming. This is wise as the space used by adaptive programs to assemble is donated by the mountain.
The result of this network of information is that adaptive skiers know where to ski. Hence adaptive programs become a highly visible presence at certain mountain. For instance New England Disabled Sports at Loon Mountain in New Hampshire has a large program and has produced para Olympic and X games competitors. For a weekend warrior such as myself this knowledge is vitally important given the expense of adaptive skiing. An entry level sit ski costs about $3,000 and a high end rig can cost well over $8,000. This does not take into consideration any other costs such as clothing, travel expenses, or gear that does not last long such as outriggers. Skiing is expensive for all but prohibitively expensive for adaptive skiers. Many foundations exist that will purchase sit skis for people. In addition all adaptive programs charge on a sliding scale and have scholarships available. In short everything that can be done on the mountain is being done. The biggest challenge then is simply to get people to the mountain itself. This is beyond the budget and ability of many people with a disability. The latest unemployment figures for people with disabilities remains unchanged�it has hovered at nearly 70% for the last 20 years.
Never did I think I would gain such a unique sense of freedom skiing. Here I am not referring to the sensation of skiing itself but the social freedom or equality I feel when on the slopes. It is the only place I have felt normal or free from the stigmatized identity that goes hand in hand with being a person with a visible disability. For a person such as myself that came of age before the ADA existed it highlights the impact and failure of the law. We Americans pay lip service to the ADA and adhere to the law when convenient or to be blunt when it does not cost too much. What is painfully evident in the post ADA era s a growing frustration and anger about the law, specifically what the ADA is supposed to do and the reality people with a disability experience. Our country in particular the medical industrial complex remains grossly inaccessible and adheres to an antiquated medical model of disability. Sure hospitals meet the letter of the law but it is not people with disabilities that determine what a �reasonable accommodation� is. Discrimination then is alive and well but in a sanitized ever so polite form.
Rather than end on a sour note, I would posit that sports has a central place in disability rights. It is one of the few activities where people with a disability effectively network. But this networking is done without any connection to civil rights efforts or such groups as ADAPT. I would argue we people with a disability that are sports oriented need to reconnect with our roots. And those roots are directly tied to vigorous civil rights efforts. More generally we need to connect with disability studies scholars who have ignored the importance of adaptive sports. If we can connect disability rights, disability studies and adaptive sports we can not only improve physical access but negate the stigma all too often associated with disability. In short, there is a chance we can make disability cool. I may be na�ve in this assumption but we need to start somewhere. In order force people to think differently about disability we must go against the social grain. We must break social boundaries and expectations. This thought came to me last season when my son made a sign for my wheelchair that I left on the seat at the base lodge. It said simply �Gone Skiing�. I observed many people trudging along with ski gear look at the sign and do a double take. Many smiled but it was clear the sign made them think and I hope question assumptions they had made about people who use a wheelchair.

Hydra Versus Cyborg

I have a strong fascination with body art. I have always been captivated by tattoos and to a lesser extent non traditional piercings. In part my interest stemmed from the stigma attached to both the disabled body and people who knowingly modified their body via tattoos. In the last twenty years society has experienced a veritable revolution in disability and body art. Today we people with a disability are protected by law, civil rights legislation known as the ADA. Indeed, we have had 40 years of progressive legislation all designed to empower people with disabilities. In body art, tattooing is now acknowledged to be a fine art. Tattoo artists and their customers are no longer restricted to bikers, sailors and other social outlaws. Today anyone and everyone seems to have at least one tattoo. I love this change and hate it at the same time. It is great people are more open to body art and always look forward to seeing art literally walk by me. However, I mourn the way tattooing has been commodified by television shows and mundane things like housewares and clothing . Likewise, some time I miss the old days when I fought an up hill and pitch battle for access and disability rights. Don't get me wrong, equal rights is still a battle for people with disabilities but an ever so polite one. How does tattooing and disability relate beyond the concept of stigma? How we perceive the body, the tattooed body, disabled body and modified body in the broadest sense of the term has undergone a radical transformation. We take for granted the incorporation of the body and technology. But how we define, value and perceive that technology is what captivates me. I think my wheelchair is the essence of cool. Others see it as the ultimate symbol of disability. I think my mother's prosthesis is also cool. Others look at the loss of a limb and not the technology that replaced it. This too adds a layer of complexity. The mixing of technology and the body, much of it from the health industrial complex is dependent upon how we value a given device. Cochlear implaints for instance are valued and an entire industry now exists around their usage. Do we value interpreters for the deaf? Not so much. How about hearing aides for the elderly. No this is not valued or covered by health insurance. Who cares if the elderly can communicate.

The thoughts above were prompted by a post by Wheelchair Dancer on February 27 entitled Crip Anatomies. She wrotte:

"I am beginning to be disturbed by the almost universal insistence that my body, my flesh body that is, disappears when I gain an assistive technology body part. I would rather begin to investigate myself and my movement potential as a kind of hydra. And I do mean hydra instead of cyborg. In cyborgs, the mechanical and the fleshly are distinct but fused into one humanoid and recognizably humanoid organism. There's no excess; technology replaces the flesh bits. Hydras seem to allow for the possibility of the technical and the flesh to continue to exist together, even if they organism they jointly create is now akin to that which traditionally has been relegated to the category of freak or monster."

I love the idea of hydras. Something about cyborgs have always bothered me. Perhaps it is my horror of Star Trek Borg like organisms or cyborgs from the Terminator movies or if you want to go farther back to Frankenstein. The essence of these cyborgs was the destruction of the creatures humanity. In some ways my wheelchair does the exact same thing--it destroys my humanity because all people seem to notice is the wheelchair and not the human using it. Hydras seem to incorporate both the human and technological component. Rather than seeing a freak or monster I see a unique human being, one that has done what we human beings have always done--adapt. I am paralyzed and I have adapted via my wheelchair. Blind people adapt via use of a guide dog. These sort of observations could go on and on. The point is we as a people have melded technology and the human body in ways never dreamed possible 20 years ago--roughly when the ADA was passed into law. What we are slow to change is not technology but how we perceive those advances and inventions. It is here where the problems lies. We value cell phones, computers, the internet, televisions and gaming platforms. One can access these technologies with ease. Why our choices are diverse and as varied as the colors of a rainbow. How important is this technology? Our economy would crumble without it. Now try and access the usage of a wound vacuum such as the one I used or purchase a wheelchair. All of sudden our choices are severely limited. Wound vacuums are not covered by insurance. Wheelchairs are covered but you get a stripped down model that will last a year or two. And we are talking about high priced items. Wheelchair can easily top $8,000 to $10,000 and more. Try and service a wheelchair in less than 24 hours and you are out luck. What happens if yoru cell phone or computer breaks? It can be serviced or replaced at a host of places. Just today I saw that happen when I bought a fancy new cell phone. This to me is an obvious social issue. One that requires a social revolution comparable to the technological revolution that has already taken place. I for one hope to see more hydras working on the problem.