A Cognitive Crip Strikes Back: A Big Picture of the Disability Problem

The last few days I have been still. It is very hot in New York and I struggle to cope with the heat. Like it or not, I am part of an at risk group. I have multiple fancy apps on my phone that alert me about all sorts of things weather related. I even have special tones for particular weather alerts.  Heat is in my nemesis. My autonomic system cannot adjust post spinal cord injury. I sweat little and my body just cooks as a result. This is dangerous and I am exceedingly cautious when venturing outside in the summer. I hate being still. I hate being trapped inside when temperatures soar into the 90s. I despise being tethered to any building or room that has air conditioning. And here is what bothers me the most: I feel vulnerable.  I do not feel like I am in charge of my own life. As my son has observed, “Dad, for a paralyzed guy you sure do move around a lot”. 

Since I have been sedentary the last three days my legs are tight as a drum. Movement is key for me. The less I move the tighter my legs become. In place of movement I have been thinking. I think a lot about disability as on hot days my body limits what I can do. The heat humbles me. When I am still my mind wanders. I worry about others who do not have the education, family support, and friendships that I have. I know too many people with a disability who live at or below the poverty line. I know that accessing appropriate social supports is difficult in the extreme and often involves humiliation rituals. On a day like today I bemoan the existence of disability. This thought is quickly dismissed for the next thought that pops into my mind is that I have been culturally hot wired to think disability is bad, something to be avoided. There is an element of truth in this. No one wants to have a disability. The corollary to this thought is the idea disabled people are the other; it is not me. That thought is deeply rooted. Thirty five years post paralysis I still wake up and think “What is that wheelchair doing in my room”.  When this happens I laugh at myself and get on with my day. But that thought still exists in my brain and it is a big problem. It is not a problem for me but for every person with a disability. Disability in whatever form it takes is framed as having a negative impact on one’s life.  This is wildly wrong and I go back to the mantra: disability is a social malady. Sure we people with a disability have different sorts of physical and cognitive deficits. In fact we people with a disability have always been present in the evolution of humankind. The evidence for this is rock solid. Talk to any archeologist and he or she will say the same thing, We humans are masters of adaptation. Disability is a very visible form of adaptation.

The core issue is that we people with a disability are hopelessly fragmented. I remind myself that we have not yet created a broad based movement. Yes, many disability related organizations exist. And yes they are active and doing the best they can in face of stiff opposition. But the disability rights movement has not just stalled it has come to a dead halt.  ADAPT protests once cutting edge have become stale, predictable, and are completely ignored by the mainstream press. Assisted suicide legislation is gaining traction. Concepts such as post birth abortion, medical futility, medical conditions deemed incompatible with life abound and are discussed in and outside of the Ivory Tower.  These are perilous times for people with a disability.

Okay the above is ominous. My mind is filled with doom and gloom. I tell myself to stop. We can do something.  If humanity is capable of one thing it is change and change we must. Lives are at stake. This hit me like a brick today when I read Claire Roy’s post today at Life with a Severely Disabled Child. See http://severedisabilitykid.blogspot.com/2013/06/there-but-for-grace-of-god.html  In There but for the Grace of God… Roy opening sentence stunned me:“I think that parents of kids with severe disabilities are the only parents in the known Universe who pray for their kid(s) to die before they do...or at the same time as they do.” This sent a chill down my spine. Roy teasingly calls people like me, scholars and activists fighting for disability rights, cognates.  When I read Roy’s post I thought I have failed. I have failed to persuade people inside and outside the scholarly community that all people with a disability share a common bond. The bias and bigotry we encounter is radically different but the root cause is the same. Roy writes about her daughter Sophie’s future. She worries about what would happen if she lived in a group home. I worry what will happen if I get sick. Will some physician I have never met think I have suffered enough and allow me to die? Neither my concern or Roy’s are far fetched. In the state of New York one in five residents of group homes dies under mysterious circumstances. What no one wants to address is why does this happen. Why do people like Roy and myself worry? We worry because we know the system grinds us down a millimeter at a time. We are ground down at a glacial pace.  On bad like today I think the system was created to crush people with a disability. On good days I am excited to part of the largest minority group in the nation. I want to go out into the world and make it better. Reality is somewhere in between these polar opposites. Roy wrote: 

It's a harsh climate folks: requires a thick skin, strong mind and body. I am damn lucky where others are not...and for them, things fall apart very quickly in the land of disability.  Often, the kid with the challenges becomes the proverbial, if not literal, punching bag.

Is this any excuse, in the end? No, not an excuse, but a big picture perspective. That's all I'm trying to say. We are no more amazing or inspirational or capable of doing this job than anyone else, platitudes about God and plates be damned. We are just people, people who are products of a society that does not know what to do, really, with the "problem" of disability. We are the ones who have to break all the rules and come up with new ones, and we don't always have what it takes to do so.

And that's why, in the end, it's the whole of society that has to change and embrace the reality of disability, so that good parents for kids with disabilities will be born instead of wrought...and over-wrought.

I envy Roy’s passionate writing skills. For better or worse, I am about as subtle as a brick thrown through a plate glass window.  A friend one teased me that I piss people off in an unconventional way.  This assessment is correct. It is why I quoted the above words by Roy. We simply do not know what to do with the “problem” of disability. In a world of tweets, email, sound bites on the news, and Facebook posts disability is ill suited for superficial analysis. To get disability requires time, energy, and restructuring all of what one was taught.  Many feelings are going to get hurt if we people with a disability are ever going to become equal and free of bigotry. People who have dedicated much time and effort to support people with a disability will be hurt. That is those that have worked hard within a charity model of disability will be offended by the civil rights approach.  Researchers who dedicate their careers to cures for a host of conditions will be hurt (people like those involved in the exoskeleton or stem cell treatments). It pains me to know my words hurt others. I lose sleep over this. But like Roy I have developed a thick skin.  More importantly lives are at stake. Here in the United States, and to a larger extent in Britain, people with a disability are under assault. The so called social safety net is being dismantled by the far Right and Tea Party extremists. This is framed in strange and despicable ways.  Read what Rick Santorium has written about the United Nations Convention on the Rights of Persons with Disabilities if you doubt me. Nothing he has stated is close to the truth.  See  http://www.thedailybeast.com/articles/2012/12/05/santorum-un-disabilities-treaty-would-ve-had-bureaucrats-unseat-parents.html

Take a good look at how Santorum had his child Bella in the background and used her as a political prop. I see this picture and seethe with rage.  My rage is not about me. It is about all others—any other with a disability who encounters needless bigotry.

The above is in a way a plea. A plea to all those with and without a disability who want to help create a social revolution.  As Roy noted we need to look at the big picture. Changing the big picture requires lots of people if not the vast majority of the population. But I believe in change. History has repeatedly demonstrated that mass movements and civil disobedience can create rapid social change. I consider Roy’s words forward thinking and this cognate crip considers her a fellow soldier happy and willing to fight the good fight. I just hope we do not go down in flames and will harken to the past and the famous line uttered during the Apollo ixii crisis: failure is not an option.  

Comparative Suffering: Tammy Duckworth's Fury

Braulio Castillo, CEO of Strong Castle is under an intense and detailed investigation. Castillo is accused of gaming the system to obtain government contracts.  Castillo is also accused of using his friendship with Greg Roseman, an important employee of the IRS, to his advantage. What drew Duckworth's fury in the video above was the fact Castillo manipulated the Veterans Administration. He claimed he had an injury and was partially disabled. Castillo injured his ankle in a military prep school. Despite his injury, he went on to play college football at San Diego City College. In maintaining he had a disability Castillo's company was eligible for special contracts reserved for disabled veterans and small businesses operating in low income areas. The competitive advantage he created resulted in $500 million dollars of contracts.  See: http://www.huffingtonpost.com/2013/06/25/irs-strong-castle_n_3498815.html

 I understand Duckworth's anger. Castillo ethics are questionable at best. In fact Castillo cannot even recall when he was so severely injured he could claim he was disabled. These sort of scams happen.  But Castillo laid it on too thick with the VA. He wrote about his injury: "Theses are crosses that I bear due to my service to our great country and I would do it again to protect this great country". If I were a disabled veteran I too would be furious. Despite the widely shared outrage, I feel decidedly ill at ease over Duckworth's outburst that has gone viral. Every major news outlet is airing part or all of the above video clip. It must be very hard for Duckworth not to explode when Castillo maintained he had a 30 point disability rating. Duckworth as may know is a double amputee and has limited use and feeling in her right arm. For her arm injury she garnered 20 disability points.

I refuse to be cynical and state Duckworth was grandstanding. Yet the visuals were striking. Duckworth is a wounded warrior who lost her limbs in battle. She was a helicopter pilot no less. Castillo  is a typical white middle aged ordinary looking man. The dichotomy is striking. If I were Duckworth I would use the opportunity to grill Castillo and get my name in every newspaper in the country. It was in short great political theatre. Still, I pause. I do not like the exchange or Duckworth's attack on Castillo. Frankly, it looks like Castillo is an unethical weasel that did his best to manipulate the system. For this reason alone, I was delighted to see Duckworth shred the man pieces. Yet again I pause. Do we as Americans really want to place a point system on disability? An arm that has limited ability and feeling is apparently worth 20 points. What then of a single, double or triple amputation? What about a spinal cord injury or head trauma? I understand the Veterans Administration is a giant enterprise and a system must be put in place to determine who is and who is not disabled. I understand disability is complex and that people with what can be considered a severe disability need services to lead a complete and active life. I do not like the point system. To me it creates and fosters the idea of  comparative suffering that is inherently divisive and subjective. Injured veterans are put into a situation in which they must fight against their brothers in arms for services. More to the point, how can we ever truly know how much another person suffers. I am not a veteran yet I am a person with what would easily be considered a severe disability. I have a high thorasic spinal cord injury and profound scoleosis that is cork screwing as I age. Periodically I have intense spasms. My back hurts at times and I have high blood pressure. I do not feel I physically suffer in a way that is disabling or debilitating. My suffering is limited to skewed social interaction and disability based bigotry.

Disability in my estimation defies any and all attempts to be placed on a point scale. For the same reasons I strenuously object to QALY (quality adjusted life years). I also am appalled at the ideas espoused by utilitarian philosophers such as Peter Singer at Princeton University and virtually all the work coming out of Oxford's Uehiro Cenrtre for Practical Ethics.  I will freely admit I lose sleep after reading a book such as Dominic Wilkinson's Death or Disability and was stunned to learn that Julian Savulescu will be a key note speaker at the October meetings of the American Society of Bioethics and Humanities (ASBH).  These men, all things considered, would prefer people with a disability would simply die or not exist to begin with. Some scholars believe in post birth abortions (yes this term exists). These ideas deeply entrenched in academic jargon scare me. Thus I do not think it is far fetched to speculate that a point system could be used to determine if a human being is too disabled to live? These scholars philosophize over the idea there is there is a threshold or markers we must achieve to be human. All of this was lost in the theatre of politics. This is something I hope Duckworth will turn her attention to some day. She is after all a warrior.

Disability and Inspiration: Complexity Abounds

As a baseball fan, I have followed from afar the story of Cory Hahn. Hahn was a recently selected in the baseball draft by the Arizona Diamondbacks in the 34th round. The odds of a player picked so late in the draft ever stepping onto a Major League Baseball field are remote. Hahn was not your typical 34th round pick. He was a highly skilled prospect coming out of high-school. He elected to attend university and might have been chosen in a much higher round had he not experienced a spinal cord injury. As one might expect, the media has jumped all over this story. I have refrained from commenting on the way Hahn's story because any critique will end up with me being deemed bitter. I am weary of this superficial accusation used to dismiss my social analysis. Two things struck me over the last month: first, baseball's relationship with disability is firmly rooted to the past. The past as in Babe Ruth hitting a home run for a dying child and classic black white movies such as Pride of the Yankees. Second, sports reporters writing about Hahn, and in general, rely on an antiquated perception of disability. Disability is bad. Disability can be overcome. Those that overcome disability are an inspiration. This is the start and end of the discussion. Baseball is far more complex than hitting, catching, and throwing a ball. Baseball is more than a game. The famous French philosopher Jacques Barzun wrote "whoever wants to know the heart and mind of America had better learn baseball, the rules, and the reality of the game". Disability is just as complex as baseball. Disability is much more than a given physical or cognitive deficit. Of course a given deficit can play a central role in the life of a person with a disability but the social not physical barriers are far more of an obstruction. 

I think what the Diamondbacks did in drafting Hahn was a nice gesture. Hahn was clearly thrilled. Who can complain about seeing a young man's dream come true? Well, I can. My complaint is not directed at Hahn, the Diamondbacks organization, or sports reporters. My complaint is about the social barriers and stigma that stubbornly cling to all things disability. Hahn's story is not framed in social isolation. I refuse to classify the press conference as a public relations coup. I am not that jaded. I think the people in the Diamondback organization clearly likes Hahn and wanted to do something for him. Let me tell you I know all too well how hard those first few years are after a spinal cord injury. As stated by one man in Murderball, initially paralysis is "mind fuck".  I will not even complain about painful lines in print such as "the Diamondbacks hit a home run drafting Hahn". Dozens of these exist and are a testament to the poor quality of sport reporting. 

To disentangle Hahn's story and the way it has been reported about is virtually impossible. On the one hand I object to the use of words such as inspiration and hero. Hahn is an ordinary young man that did what the vast majority of people do when they are suddenly paralyzed--he adapted and moved on with life. This is not inspirational. It is simply what people do. Thus I find Hahn's story misleading if not inherently destructive. It is assumed disability is bad. Disability is framed against a broadly understood conception of normalcy. Walking is normal, using a wheelchair is not. If a person that uses a wheelchair does anything, lets day get in and out of a car, earn an education, work (gasp), have a family, (bigger gasp), and lead a rich and wonderful life they are inspirations to all. Sorry, but no.We crippled people are just like any person without a disability. We people with a disability merely navigate the world differently. And bipedal people, my neighbors, elected officials, teachers, doctors, lawyers and businesses refuse to negotiate our difference. The world is constructed physically and socially for people who ambulate on two feet.

What I find frustrating in the extreme are quotes from Derick Hall who was involved in the draft. He stated "It was a very emotional selection for us to make. When Ray Montgomery and his staff came up with the idea and presented it to me, it was a no-brainer. It's not about us. It's really about Cory and his family. When viewed through the narrowest lens humanly possible this is correct. It is about Hahn and the injury he experienced. But this reinforces a convenient truth that disability is about an individual  and nothing more. This let's the bipedal masses off the hook when they knowingly reject the idea of making the physical and social environment accessible to all. Sure there is greater physical access than ever before. This access is not valued and is begrudgingly created. Thus unlike your typical reader that gets misty eyed reading about Hahn, my reaction is very different. I wonder is every stadium the Diamondbacks play in accessible? Are all team facilities from double A to AAA ball accessible. So I imagine a different press conference one that states the Diamondbacks seek to become the first organization in baseball to dedicate itself to making every team facility 100% accessible.  The organization will not meet the ADA requirements but exceed them in every way possible.

On the positive side of the ledger, Hall also stated "we want to make this permanent. We don't want this  to just be about the selection and him being a draft pick, but about him working in full time employment with the Diamondbacks and hopefully we'll make that come to fruition for he and his family here soon." So in less than eight minutes we have two narratives. Hahn the hero who overcame his disability. This makes me cringe. In contrast, there is Hahn who has a job prospect within baseball when he graduates from university. Great but my goodness let me dream. Baseball is about America. It is America's game and we in the Diamondbacks organization will put people with a disability front and center of the employment line. Additionally, we call on every other major league team to do the same. Sadly, I worry about Hahn as I know the sort of physical and societal biases he has faced and will continue to face. Living with a disability can be crushing. Lives have been lost--an unknown number for sure. It is too bad the Diamondbacks organization, like the rest of America, cannot make a leap in logic and frame disability in a civil rights framework. 

Murder and Hate Crimes: Part II

Robert Gensiak. Remember that name. I doubt anyone else will in a week or two. Be forewarned the following words will be gruesome. They are gleaned from a dozen or more news accounts.

Two years. For two years Robert Gensiak world consisted of one room. On the day he died, the 32 year old man who had Down Syndrome, weighed 69 pounds. When he arrived at the Emergency Room he has not been seen by a physician since 2009 nor had he received any medical care. He could not stand up and was so agitated he had to be sedated. He was hypothermic and his body temperature was 92 degrees. He was severely malnourished. He was found to have severe heavy plaque psoriasis. He was admitteed to the hospital on March 19 and died March 22. An autopsy was performed on the day he died. His body was covered from head to toe with a thick yellow scab like rash. The rash was cracked in multiple places leaving large open sores. Open woulds were visible on his shoulder, hip, back and foot. Blood oozed from the many cracks in his skin. The few remaining teeth he had were loose. Lice covered his head. There was no food or fluid in his stomach. The cause of death was sepsis due to break down of the skin. The autopsy report made me cry. Thankfully no photos were included in the criminal complaint. The criminal complaint can read here: https://dl.dropboxusercontent.com/u/48182083/Gensiak.pdf

The district attorney Andy Jarbola stated "this is the worst case of neglect I've seen in the last 26 years" and added the "family, the mother and two sister, basically let this young man rot to death".  The single room Robert Gensiak was confined to was filthy. The child sized bed he slept in was fecal stained. The chair he sat in was fecal stained as well. Investigators said the stench upon opening the bedroom door was over powering.

Robert Gensiak's mother, Susan, his sisters Joan and Rebekah, are accused of murder of the third degree, involuntary manslaughter and neglect of care-dependent person. Joan Gensiak was also charged with endangering the welfare of a child (she had a toddler living in the same residence). Joan Nensiak's child was placed in the custody children's youth services. Rebekah Gensiak is approximately eight months pregnant.

When I read about the condition of Robert Gensiak's body and living conditions I thought of the horrific images that emerged shortly after German concentration camps were discovered. The world recoiled in horror.  I had the same visceral reaction when I read about Robert Gensiak. I was horrified. This man suffered. The news and circumstances of Robert Gensiak death are being reported widely. In my estimation it is being used as filler. A 50 to 100 word story or one minute summary on news radio outlets. Only the local paper, the Times Tribune, appears to be doing some follow up. Predictably news reports are focusing on who to blame. Social service providers are being asked how could this have happened. How could a man with Down Syndrome fall through the cracks and be horrifically abused? I find this a very simple question to answer. Robert Gensiak existence was not valued. Federal and State budgets are being slashed and the most vulnerable among us are being hurt the most. Robert Gensiak death did not take place in a social vacuum. His horrific death is a clear sign we as a people have utterly failed. The Federal Government failed this man. The local social services agencies failed this man. The disability rights community failed this man. The Department of Public Welfare and local human service agencies failed this man. We all failed.

I have no interest in assessing blame. Based on news reports, I am appalled at the reaction of some. Patrick Quinn, director of residential and adult day services for Arc of Northeastern PA implies help was a phone call away. William Browning, the local County's director of human services stated "The thing is they have to make the phone call, but sometimes that doesn't happen". Browning went on to state there are several county and nonprofit programs available for people with intellectual disabilities. He added "It's a pretty robust network". I find this hard to believe given the brutal federal and state budget cuts. What I would like to know is who was supposed to make a call on behalf of Robert Gensiak? His mother or sisters who are charged with murdering him? A physician he had not seen in two years? Who is the they Browning refers to?

Robert Gensiak is like many other people with a disability, physical or cognitive. He lived in complete and utter social isolation. He was abused by family members--the same people that are supposed to love and care form him. No individual or agency stepped forward to help. Robert Gensiak death is being framed as a horrible incidence of abuse. He was indeed abused horribly. In framing his death this way Robert Gensiak is not the victim of a hate crime. The Federal Government is not getting involved as of today. To me, this is a double tragedy. First he was abused and his family is accused of murder. Second, his death is a hate crime but is being classified as a case of abuse.  Of course he was abused. The end of his life was painful in the extreme. So I ask the question why? Why is this not a hate crime? A substantial philosophical shift must be undertaken at a national level. Robert Gensiak died because he had Downs Syndrome.  He was killed because of his disability. This is the sort of discussion we need to address now.

Murder and Hate Crimes Against People with a Disability

I do not write that often about two subjects disability related: organ transplants and the murder of people with a disability at the hands of their own family. I find these subjects too disturbing to devote a significant amount of time to. I know with certainty that I will never receive an organ transplant. The reason for this bothers me: my existence is not valuable. Few people with a disability get an organ transplant and I no longer have any trust in the system that decides who lives and dies waiting for an organ. The stories I read are just too horrible for me to deconstruct. The other topic, a subject I have never addressed on my blog, is the murder of people with a disability. I have discussed the  legal prosecution of family members such as 23 year old Daniel James whose parents took him to Dignitas and facilitated his suicide in 2008. Cases of assisted suicide, specifically when family members help a sibling, parent, or child with a disability die, are framed as mercy killings. These stories abound and few people who kill their disabled loved ones are ever convicted of a crime. While I consider these murders hate crimes such a position is unusual. I am not alone in my thinking. People in the neurodiversity community, too often the victim in so called mercy killings, have been particularly vocal about the murder of people with disabilities. Autistic Self-Advocacy Network (ASAN) is calling for the recent death of Alex Spourdalakalis to be considered a hate crime. I wish them well but do not expect ASAN to succeed. The fact is killing a person with a disability is socially acceptable. It is an act of mercy. The murdered person is put out of their perceived suffering and the murderer is no longer burdened by the care required to keep a family member alive. It is a win win situation. For those that think my views are harsh I suggest you read S. E. Smith in XO Jane. http://www.xojane.com/issues/yet-another-disabled-child-killed-by-family

I do not know too much about S.E. Smith aside from the fact I find her writing about disability and feminism to be top notch. Her most recent article in XO Jane, my favorite online feminist magazine, is particularly pointed. I share Smith's rage. Exactly, how many people with a disability need to be murdered before people and the mass media get the idea: the murder of people with a disability is often a hate crime. How many people know the names Tracy Latimore, Markea Blakely-Berry, George Hodgkins, Ky;a Puhle, Tom Inglis, Daniel Kirby, Karandeep Arora, Leosha Barnett, Ajit Singh-Mahal, Gerren Isgrigg, and most recently Alex Spouralakalis. The violence is shocking. The murders are tortuous and premeditated. Children with disabilities have been starved to death by their parents. People with a disability have been shot and stabbed to death by friends, family and strangers. Murder suicides are not uncommon.  Smith soberly notes the biggest potential source of abuse for people with a disability is their own family. And what happens when people with a disability are abused or murdered? The family members who kill their own flesh and blood are lauded as heroes. The message is not complex: death is preferable to life with a disability. Smith maintains the narrative is consistent. I agree. She rails:

Do I sound bitter? Do I sound angry? Do I sound like a bad cripple? I'm not surprised. I am bitter, and I am angry, and maybe that makes me the very worst kind of cripple, but maybe it makes me the very best. Because I don't believe that some human lives are worth more than others, and I don't believe that killing human beings as though they're downer cows is a mercy. And this is something that I refuse to shut up about, even though most of the time it feels like no one cares, because I see my people dying at the hands of their family members and it makes me burn with fury. 

The fact is hate crimes against people with a disability are commonplace.  One needs to look beyond the statistics however because crimes against people with a disability are not reported. In 2011 the FBI reported that there were 6,216 single bias incidents. Of those bias crimes reported 0.9 % were disability based. There is obviously a profound disconnect here. Simply put, people with a disability do not report hate crimes. Even when a bias crime is reported by a person with a disability it is usually classified as being an incident of abuse. On the rare instance when a disability hate crime is reported in the news, blame is levied on the lack of "social services".  Is there a gross lack of social services for people with a disability? In a word yes. Is the lack of services the source of violence? In a word, no. Smith ends her powerful essay by stating Alex Spourdalakalis family decided he did not deserve to live. 

ASAN notes that: His death is not about services, nor is it about the difficulties associated with his disability. Prior to murdering him, Alex's mother was offered and refused services from the Illinois Department of Children and Family Services. Similar interventions have been documented in a number of murder cases involving disabled children. Child and family services have identified abuse risk factors., have attempted to reach out to help families with disabled children, have tried to prevent murder, and they have failed. To be disabled in this country is to be considered less than a full human being. To be a disabled child, or a disabled adult who needs supportive care, is to know that your life is literally in the hands of people you rely on to love and care for you. And those people may well think that murdering you would be doing you a favor. 

Read Smith's words carefully. I did and I shuddered. I shuddered because not long ago I was entirely dependent upon my family to care for me in 2010/2011. My family cared for me and loved me. Looking back at the time when I had no choice but to be bed-bound, I have many regrets. I was miserable and let my family and the world know it. I deeply regret this. I understand why I was miserable and depressed. I was in an impossible situation. My life went from fully independent to utterly dependent overnight. Today, I know I was lucky. And this too is why I shudder when I read about the murder of people with a disability and rampant social social abuse. People with a disability die of social neglect daily and some are murdered. The exact numbers are unknown. The best indication we have as to the numbers of people with a disability who are abused can be found in accounts at the Bureau of Justice Statistics. 54 million Americans with disabilities experience serious violence at a rate more than twice that of the general population. I believe this is a human rights tragedy that is being swept under the carpet. It is too horrible to contemplate because it can happen to anyone with or without a disability. For the odds are good if you live long enough you too will become dependent upon others. As a culture, we shun dependent or non productive people. We place the elderly in nursing homes. We create groups homes for those with cognitive and physical disabilities. People with mental illnesses are sent to institutions. Schools have resource rooms to isolate students with special needs whose presence is upsetting to other children. We have "special transportation" in the form of short buses to stigmatize children with a disability. 

Let me ask the following: Who is Matthew Shepard? I would bet most American adults that follow the news in a cursory manner can answer this question. I bet some would even recall that in 2009 President Obama signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Act. Let me ask another question that I suspect takes one into unchartered territory: does the aforementioned legislation that expanded federal hate crime law include disability? The answer is yes, an affirmative that would puzzle the average person. When we think hate crime images of the KKK and a burning cross come to mind. Does disability figure into the equation? Not at all.  So let me end with another question: Who is Jennifer Daugherty? If you do not know the answer please google her name. Read about this woman and then tell me hate crimes against people with a disability do not exist. 

Cripple Stud

I am not a cripple stud. I know a lot about being crippled but no one has ever mistaken me for a crippled stud. Cripple studs do exist however. We all know what a cripple is. A cripple is a lame or partly disabled animal. A cripple has experienced or was born with a damaged or defective body part. A cripple's body is physically impaired. We know what a stud is. A stud often refers to a male animal kept primarily for breeding. In the human realm a stud is a young man who is good looking, virile and has sex with multiple women. Studs, human and otherwise, are impressive. Cripples on the other hand are not impressive. In short, few would ever put the words cripple and stud together. I know one group of people who are the exception: carpenters. A few summers ago my son and I were helping good friends replace a window and I learned that crippled studs abound. In virtually every home in America a cripple stud lurks behind the dry wall. I find this wildly amusing. In carpentry, the word cripple, refers to a special purpose wall stud or roof rafter. A cripple stud is located above a door or window. Cripple studs are like any other studs--they are simply cut shorter to allow a window or door to be installed and provide a nail base.

I did a google image search for cripple stud. I found a lot of images of complex wall designs.  I did the same image search for the word cripple. I was not impressed with what popped up on my computer screen. I found the archetype wheelchair logo. I saw pictures of many amputees. I saw lots of images of antiquated wheelchairs. I saw images of people begging on what appeared to be Victorian era streets. I did not see one powerful or what could be deemed a positive image. I did not see a single crippled stud.  Other google searches were suggested: cripple stud walls, building cripple stud, do it yourself cripple stud, jack studs, framing a wall with a window and other carpentry specific suggestions.

I object. The good folks of google think crippled studs do not exist. Crippled walls are firmly limited to wall supports for a door or window. I have news for google. We crippled men and women like sex. Surely somewhere in America a crippled stud exists. Perhaps the young men depicted in the film Murderball are studs. Surely, there must be some crippled young man out there  that is young, virile and good looking having sex with multiple female partners. So in my search for a cripple stud I did another google search: cripple stud sex. This was a big mistake. I saw lots of images I did not want to see that fit squarely into the strange world of sexual fetish. And this is a problem. On the rare instance one puts the words sex and disability together the first thing that pops up is strange or freakish. The point I am trying to get at is that cripple and stud are incongruous. Stud and cripple do not go together and I cannot help but wonder if some drunk Middle English carpenters of yore came up with idea of linking cripple and stud as some sort of joke. Sex and disability are are also thought to be incongruous. I object. This  in turn led me to wonder if disability can be sexy. I abandoned the internet and went to my book case filled with memoirs written by people with a disability. It did not take me long to realize we cripples write about sex. And yes we cripples like sex.

The most diverse book I have read on sex and disability is titled Sex and Disability edited by Zobert McRuer and Anna Mollow. Published in 2012 the books origins date back to the 2004 MLA (Modern Language Association) meetings. For those non academics reading this post, yes it can take that long to produce a book whose origins can be traced back to a particular session at an academic conference. What I like the most about Sex and Disability is its particular focus. Major studies in sexuality, think foundational texts, ignore whether crippled men and women have sex or are interested in sex. Even queer theorists often blatantly ignore sex and disability--a remarkable oversight for an otherwise socially aware disenfranchised group. I think there is much we can learn from discussing sex and disability. The topic opens up a sea of possible erotic connections that might otherwise be ignored and as Anna Mollow noted in the Introduction crippled people have a "libidinal investment in all this". Multiple authors in the volume make the point that neither sex or disability is static.  When I was a young man I was often asked "can you do it?" This question made me angry and sad at the same time. If I were your archetypical bipedal man would a woman ask such a question? Not a chance. Fast forward 35 years and I am not asked this question enough. This change makes me wonder: have we as a society advanced so far women assume we paralyzed men are sexual studs? Another darker thought comes to mind: Am I so old it is assumed my sex life is the past? Perish the thought. But then again one of my students last semester referred to me as being "an elderly man".

I had sex before and after I was paralyzed. But the fact remains I have spent virtually my entire adult life paralyzed. In fact I have lived with paralysis far more than I lived without it. And I think being paralyzed makes me a better man and lover. In having my sexuality routinely called into question as a young man I was forced to think about the way men and women approached the body. I knew I could never measure up to social ideals. I was and would always be crippled. Women faced a comparable conundrum. Only a tiny proportion, if any, women can measure up to social ideals associated with beauty.  A crippled man, and for the women I have been intimate with, sexuality involves much more than a physical act. Sex is about the entire body and mind. And let me tell you we humans are wildly creative and adaptable when it comes to sex. Men and women approach the body in radically different ways. This has led to much frustration on the part of men and women. It also led to Feud's famous line: "What is it that women want?" I am not sure I have much to offer in terms of an answer as there have been times in my life when women have absolutely baffled me (and I have no doubt I have bewildered many a woman). I think what I am trying to get at is that we crippled men have been forced to think out of the box about every aspect of our life. We cripples have no choice but to master the fine art of human adaptation. Our ability to adapt is an integral part of our lives, sex included.  Disability, sex, and bodily pleasure and difference are all intertwined for me. Herein lies a secret for the female readership of this blog. Paralyzed men make the best lovers. Forget about all those bipedal men. Afterall, we paralyzed guys are crippled studs.

I am Not Alone Part II

Wel the stars must be aligned in some way. Smart Ass Cripple just answered a question on his blog today about how does one become a bitter cripple. See http://smartasscripple.blogspot.ca/2013/06/ask-smart-ass-cripple-volume-iv.html His answer is classic. It had me on the floor laughing. First he defines what a bitter cripple is and then explains people without a disability can only be honorary bitter cripples.

The term bitter cripple does not refer to a physical condition. It is, rather, an advanced state of consciousness. It is an exquisitely indefinable stage of enlightenment that is attained by freeing one’s self from the tyranny of bull shit.

A bitter cripple, essentially, is a cripple who is pissed off about how cripples are treated. There is no single path to becoming a bitter cripple. I view achieving enlightenment (religious or otherwise) in the same way I view achieving orgasm. Who cares how you get there, just so you get there.

However, to truly understand what it means to be a bitter cripple in all its many dimensions, one must actually be crippled. But the good news is the enlightened uncrippled like you can become honorary bitter cripples. All you have to do is convince an actual bitter cripple to bestow that title upon you.

I must warn you though that even being an honorary bitter cripple is a lot of work. Bitter cripples and our allies are on the frontlines of the ongoing War on Bull Shit. The allure of bull shit is relentless. It’s always trying to win you back, always trying to convince you that you shouldn’t be so upset so much. Bull shit wears many disguises. You must be vigilant.

It's much easier to just give up and be a sweet cripple or, even worse, a bittersweet cripple. Being a bitter cripple is a lifelong commitment. It can really wear you down. I hope in my lifetime the forces of bull shit will be vanquished to the point where I can ease up a little and retire to the status of bitter cripple emeritus.

Yup there you have it. I am waging a war on bull shit. What have I gotten myself into.