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.