Rights Come to Mind

I was supposed to be in Washington DC today. For a multitude of reasons, I was unable to travel. I was supposed to say a few words about Joseph Fins new book Rights Come to Mind at the American Society for Bioethics and Humanities annual conference. Below is what I was prepared to present. It is longer than most blog posts as Fins work is nothing short of brilliant.

In 2012 I sent Joseph Fins an angry email. At the time, Fins was the President of the American Society of Bioethics and Humanities and I was furious. I planned to attend the upcoming meeting of the ASBH and I had gotten the run around. No one at the ASBH had any information about wheelchair access. A blizzard of emails were exchanged and I was no closer to accessing basic information about wheelchair access at the conference. My inquiries were met with shorter and shorter replies from conference organizers. Based on past experience I knew academic conferences are rarely inviting to scholars with a disability but the ASBH appeared to be openly hostile. When I got a dismissive email that stated “call the hotel” I could not control my fury. My wrath was directed at one man—Fins. I got an instant reply. Fins asked me to call him immediately. I did so and he instantly apologized. I was not the first scholar to complain about the lack of access for scholars with a disability. He told me he knew two other scholars one of whom was blind and the other deaf that had encountered significant barriers at the meetings. Fins also informed me that a ASBH presidential task on disability had been formed years ago and that concrete suggestions had not been enacted. He was clearly as frustrated as I was. Taken aback, I knew I had an ally.

Fins had quietly been working to make the ASBH meetings far more accessible. He suggested we meet in person to strategize—he wanted to work together and make the meetings not just physically accessible but welcoming to scholars with a disability. Fins response was highly unusual. Emails such as the one I sent are typically forwarded multiple times in search of an unlucky individual who is willing to write a reply. Fins and I did meet. He is an easy man to gravitate to. He is gregarious and if he is in a room you know it. What you do not see is how deeply he cares. He cares about people others in the health care system do not want to want to even think about. More than any other scholar I have met who works in bioethics, Fins gets disability. However he gets it in a unique way as physician without a disability. I have only met two physicians in my life that I can say this about—Fins and Arnold Gold.

Fins frustration is readily apparent in his book Rights Come to Mind. Fins marvelously sees a world of possibility among those who are in a minimally conscious state. Fins has no definitive answers. In fact, he raises more questions than answers. His work is deeply unsettling. Regardless of whether a person agrees or disagrees with his conclusions his nuanced discussion forces the reader to think long and hard. I consider Fins book to be the Triste Tropic of neuroscience. While Claude Levi-Strauss went to the Brazilian rain forest in search of humanity Fins delved into the lives of those in a minimally conscious state.  

Fins writing is a griping and wildly evocative. I felt like I was with Fins when he describes meeting the families of those who had a loved one experience a devastating traumatic brain injury. Thanks to remarkable advances in medical technology people survive severe trauma to the brain. The same can be said about spinal cord injuries. Rehabilitation treatment post acute care for those who experience a traumatic brain injury or spinal cord injury is cursory at best. If one does not rapidly improve, in mere weeks by health insurance standards, a person with a traumatic brain injury or spinal cord injury can find themselves in a nursing home before they have begun to grasp the implications of their injury. The subsequent familial, social, and economic implications post injury can and do devastate families. The families that were able to meet Fins are the tip of a much larger population that are carefully and dare I say knowingly hidden away.

Reading Fins book I kept thinking of a single word--disenfranchised. This word describes my life and all those who have experienced a severe spinal cord injury or traumatic brain injury. Disenfranchised describes we survivors. We are the other. Symbolically and practically we are feared, isolated, and marginalized. Our mere presence is upsetting to normates to use RoseMarie Garland Thomsen’s awkward phrase. Yet what I experience as a man with a disability who uses a wheelchair to navigate the world pales in comparison to the people Fins has studied. Fins is focused on a new class of people that have existed since 2002; that year minimally conscious state (MCS) became a diagnostic category. Simply put these people have been written off despite the fact 40% of those thought to be permanent vegetative state after a traumatic brain injury are in a minimally conscious state.

The idea that traumatic brain injuries and spinal cord injuries are static after an undetermined time period is false. What is observed clinically are significant and profound deficits. This is as obvious as it is devastating. The lived experience, however, is radically different. There is a failure of imagination that is astounding to those who go on to live for decades post spinal cord injury and post traumatic brain injury. From a clinical perspective we are medically stabilized, given a few weeks of rehabilitation and never observed again. This process is deadly. Medicine has collectively ignored the class of people Fins wants to help. Fins idea of help is tied to a civil and disability rights framework. This is why Fins book has been repeatedly referred to as quietly revolutionary. Fins work should be mandatory reading for all people concerned with social justice issues foremost among them disability rights. Elegantly written, Fins forces the reader to think the unthinkable. A persons life is saved after a devastating brain injury. After weeks or maybe a few months, a person is deemed to be in a vegetative state. Here the names are well known—Karen Ann Quinlan, Nancy Cruzon, and Terri Schiavo. Family members however see flashes of awareness and cognition. This is quickly dismissed as denial or delusional hope. Fins subtle but revolutionary point is that there is hope for those in a MCS. A damaged brain can and does evolve. The brain can change just as my spinal cord has since I was paralyzed in 1978. Yes, I remain paralyzed but not in the way I once was. Age and time has changed my body and this includes my spinal cord and the same can be said for those who have a traumatic spinal cord injury. This has been observed by parents who care for a child that has had a profound traumatic brain injury and whose cognition was severely damaged. (Peace and Roy 2012; Kittay 2002). Like me, these survivors change as they age. This change is part of life with a disability and modern medicine is ignoring a fundamental aspect of science. Adaptation and human variation is critical to our survival as a species. What we deem normal or even ideal is ever changing and subject to a multitude of forces. Enter Fins and his belief that over long periods of time the brain can evolve and recover to one degree or another. Fins is looking past the deficit and imagining what is possible. Can we reach people in a MCS? Is there hope in what most see as nothing more than tragedy. At Weill Cornell Medical College Fins characterized those that come to see him in the following way:

When they arrive, most are worn out. They are like refugees, having been cast aside by an indifferent health care system that provided brilliant emergency care only to abandon them thereafter. Irrespective of difference in race, ethnicity, class, or state of origin, a stereotypic pattern of neglect emerges… The overall story becomes rather predictable. Families face pervasive nihilism with practitioners assuming a static notion of brain injury. Despite stunning scientific evidence to the contrary, the prevailing view in the clinic is that all brain injuries are immutable. From this perspective, it is preordained that the injured brain cannot recover and that the humane course is to pursue palliative care, to let nature take its course.

The message here is far from subtle. Go away. You are wasting your time caring for such a loved one. Let nature take its course is a euphemism for the life in question is not worth living. Efforts to enhance the life of those who experienced a severe brain injury is a waste of limited health care resources. Devotion of family is perceived to be a problem. I understand both health care workers and family perspectives. A physician is being tasked to treat a person that has experienced a devastating brain injury. Here Fins brilliantly uses the experience of the Worthen family. Maggie Worthen was a senior at Smith College who experienced a brain stem stroke. Maggie survived her stroke and her mother, Nancy, did not believe her daughter was in a permanent vegetative state. After a battery of tests, Fins conformed Nancy Worthen’s belief; her daughter was at times conscious. Over time Maggie was able to communicate via a prosthetic device called My Tobii that tracked her eye movements. Maggie’s life and her mother’s effort to communicate with her is made all the more personal when Fins reveals she died shortly before his book went to press. Nancy Worthen’s quest was deeply personal and this forces the reader to think of Maggie as not a tragic life lost in its prime but rather the death of a human being that had human rights even in a MCS. If the reader does not become misty eyed when reading Fins book they have no heart. Essentially Maggie is the symbolic representation of all the families that sought out Fins who saw hope for their loved ones in a MCS. These families were not in denial. They did not have unrealistic hopes of a full recovery. The families Fins described simply could not give up hope a degree of recovery and communication was possible. Indeed, Fins amply demonstrated familial expectations were modest.   

Fins people, those with disorders of consciousness—especially those in a minimally conscious state—are at the edge of our understanding of what life means. Fins goal, is to give voice to these people and their families. Littered throughout the text are devastating and insightful critiques of society and our health care system. One sentence stood out to me though and I vividly recall pumping my fist after reading the following sentence: “The paradox is striking: the promise of neuroscience and the challenge of reimbursement schema that truncates the potential for recovery. Brains recover by biological standards, not reimbursement criteria”.

The Worthen family narrative is the heart and soul of Fins book.  Lest one doubt Fins, the text is based on exhaustive research. Fins details how we have failed those who are in a minimally conscious state via extended interviews with 53 families. Fins also conducted nearly ninety hours of interviews and produced 2,750 pages of transcripts. The conclusion is as inescapable as it is devastating. Fins “depicts a landscape of clinical neglect”. In essence Fins has penned the first ethnography of those in a MCS. As the custodian of 53 carefully crafted narratives, Fins “seeks to give voice to their struggles and to explain why the scientific study of brain injury, whose mysteries constitute the holy grail of science, has had so little impact on the lived experience of patients who have a tenuous grip on consciousness. Brilliant science and rather indifferent care. It is a paradox worthy of a book, and one ripe for denial”.

There is no question the American health care system has failed the families Fins interviewed. In 2015 Fins spoke at the Society for Neuroscience in Chicago and said the neglect of people with brain injury is “a question of depriving a highly vulnerable group of patients their civil rights”. This is a story people with a disability know all too well. Fins knows he is fighting an uphill battle. Those that understand civil rights and disability rights are one in the same could be characterized as crusaders or a social justice advocates. A few renegades are well known to people with a disability; Ed Roberts, for instance who is considered the father of the independent living movement. I thought of Roberts at the end of Rights Come to Mind because I found his short chapter—“A Call for Advocacy” nothing short of inspiring. Fins wrote:

We must build upon the disability rights movement with its deep debt to its predecessor movements and affirm consciousness as a right that must be recognized, respected, and enabled. It will foster productive science and rectify societal deficiencies that remain untenable, if not inhumane. The goal is a nascent social movement that will place the needs of these patients and families on the legislative agenda, so that in bipartisan fashion they can be fully protected under the law and receive the care and support that they need. To begin we need our generation of Freedom riders, those who won’t wait for the times to change but make them their own. These advocates will join in the long march of a new civil and disability rights struggle.

Where do we start such a movement that Fins calls for? In a word education. In an article about Fins book in the Houston Chronicle Star Fins made a provocative suggestion I want to expand upon. Fins stated “Why not think of rehabilitation as education?”  I would suggest rehabilitation was once educational and the best interests of the patient came first and foremost. In the late 1970s and early 1980s rehabilitation was primitive by contemporary standards. What it lacked in modern technology it more than made up for in its length and intensity. I am not suggesting we return to out dated ideas about paralysis and traumatic brain injury. I am however suggesting modern rehabilitation is horrifically flawed and fails to address the needs of people who experience significant neurological deficits. As I already quoted Fins: “reimbursement schema truncates the potential for recovery. Brains recover by biological standards, not reimbursement criteria”.  People who experience a significant neurological deficit such as a stroke, spinal cord injury or traumatic brain injury are simply not given nearly enough time to recover much less adapt to life post injury. Without question critical care most people receive is outstanding. But the rehabilitation process is swift and cursory. We are setting up people to fail. Worse, for those who Fins writes about they have been given no chance. This failure is not about the limits of modern medical care and rehabilitation efforts but rather a profound statement on the degree to which the lives of people with profound disabilities are not valued.

My suggestion is to add an additional step to the rehabilitation process in the form of an educational rehabilitation center. Borrowing from mental health care, I suggest educational rehabilitation centers be formed in a style much like halfway houses for those recovering from addiction. People post injury need time, support, peer mentoring, job training, communication development, and most of all time to adapt to an injured body. Among those I know who have lived for decades with a profound disability we laugh among ourselves that physicians consider our injuries are static. Our bodies change for better and worse. We adapt to those changes with grace and dignity. It is unfortunate clinicians are unaware and perhaps have no interest in what we might have to say about our quality of life. It gives me great solice and energy to know a man like Fins who is among the most distinguished bioethicists in the nation is advocating for my people. 

Rejecting Super Crip Stereotype: The Ordinary is Impossible

I have become a weekend warrior. Less than 10 minutes from my home is the Onondaga Bike Trail. I ride my handcycle around the lake. Google tells me Onondaga Lake is 4.6 miles long and 1 mile wide. I do not as yet own an odometer so I am not exactly sure how many miles I have been biking. Suffice it to say I am chewing up some serious miles. I learned this just yesterday in large part because it took me ten minutes on the interstate to locate the end of my route. Regardless, when I start out on my bike I crank as hard as humanly possible from the start of the trail to the end. I pass all sorts of people: families ambling slowly along, a sea of joggers, and when going flat out I pass other bikers. Believe me a handcycle can go fast and far. On my rides I thoroughly enjoy myself.

The down side to biking are the inevitable and unwanted comments. Everyone has something to say to me. I get it. A recumbent bike is out of the norm. A handcycle is even further out of the norm. People are inherently curious and difference attracts attention. What I have quickly learned is that stopping is a bad idea. People are eager to engage me. I have no interest in engaging others. The exchange is always the same: "Wow, that is such a cool bike" or "You are amazing!" or "I see you every weekend--remarkable" or "You are inspiring" or "You are so cute on your little bike" or "You need a horn" or "You shouldn't be allowed on the trail". These comments and others reinforce the idea I am inherently different. Idly stopping and having an ordinary conversation simply does not happen. I am also at the center of many passing conversations. Almost all those conversations revolve around how "amazing", "cool" or "inspiring" I am. I despise this. The reality is I am an average middle age white male who wants to enjoy being outside biking. There is not one remarkable, amazing or inspiring thing about me. I completely and utterly reject the super cripple narrative. I have not overcome paralysis. I have adapted to paralysis. I have not through sheer willpower and hard work overcome my disability. I have adapted to a world indifferent or flat out hostile to my existence. I am not the poster image of disability nor do I represent all disabled people. I am merely one man.

What the super cripple notion makes me is different. It forces me to be the other. The other can easily be turned into a stereotype. In my case, when I bike I am a triumphant figure. This incorrect belief only perpetuates the stigma associated with disability. It is inherently damaging because the flip side to this coin is that I make other people with a disability look bad. They are not triumphant figures. No sir. They are lazy and unmotivated failures. In individualizing disability it is all too easy to ignore or dismiss what is obvious to me: the constructed world is not made with cripples in mind. Barriers abound in the form of ableist bias that is woven into the fabric of society. I am repeatedly told that wheelchair access is very important and that inclusion of others is critically important. These are easy words to utter. Reality is different. For instance, Syracuse University constructed a multi million dollar promenade as part of its long term campus framework for the future. The promenade, a central feature of campus, has made the campus less accessible. When wheelchair users strenuously objected to the inclusion of multiple stepped tiers bipeds were shocked. At a recent meeting I stated that "the promenade project is a symbolic fuck you to every wheelchair user".  My statement was viewed as harsh. This is correct in a way: life as a wheelchair user is indeed harsh. My life and the lives of others with a disability is harsh because we are socially, economically, politically, and practically discriminated against on a daily basis.

Strangers are not intentionally demeaning me when I ride my bike. They want to feel good about the world. We Americans love stories of overcoming adversity. I am in the estimation of the bipedal hordes that surround me a classic over achiever. I have triumphed in the face of disability. Bull shit. Yes, I have worked hard but what I have overcome is a social system that plays lip service to the inclusion of people with a disability. Bipeds and those that do not live in the land of disability ask all the wrong questions. Instead of deeming me a super cripple and being awed that I am doing the ordinary typical others in an effort to feel good are only further alienating me. Bipeds just don't get it. There is a cultural divide that they do not even know exists. The real reason you do not see people such as myself biking is because handcycles cost a fortune. All adaptive sports equipment is ridiculously expensive. A ski rig costs thousands of dollars. The same can be said of handcycles. At the well-known website, bike-on.com, one can purchase a hand cycle that can cost upwards of $10,000. Entry level racing handcycles start at $5,000. These prices preclude almost all people with a disability from participating in the ordinary. Yes, adaptive sport programs abound. Special adaptive events are held nationwide. All this is wonderful and I truly support adaptive sport programs. Here is the proverbial but. What sort of message are adaptive sport programs sending if participants cannot afford to own adaptive gear such as handcycles or a ski rig.  Are we people with a disability relegated to special events just as we are relegated to special education, special buses and special transportation? What about family life for a parent with a disability? You are married and have a child. You are one of the few people with disability who are employed and have access to mass transportation so you can get to and from work. You want to bike on the weekends with your child. How many families can spend $5,000 on a handcycle or the same amount on a ski rig? Virtually none. The ordinary is never really ordinary for my people.

Brilliant adaptive design exists. Your average cripple can look at such designs but almost all cannot afford such design. For a mere $10,500 you too can own the Carbonbike Evo Jet.

How about a Panthera X wheelchair? This carbon fiber framed wheelchair costs about as much as a brand new Fiat.

How about a racing wheelchair? This beauty can be had for just $3,300.

Let's do a little math. Every day wheelchair of my dreams--$12,000. Hand cycle, $10,500. Racing wheelchair, $3,500. Ski rig, $5,000. That adds up to a very expensive $31,000 if my math skills are up to par. I understand top of the line design is expensive. I also know we live in a capitalist system and that without profit margins excellent design and innovation wouldn't exist. But at what expense to others, in this case crippled others, is acceptable. There are profound economic reasons why I am the only weekend warrior riding a handcycle. There were a myriad of reasons when I got my degree at Columbia University that I was the only wheelchair user on campus. There are reasons why I know no other fathers who are paralyzed. I find it distressing that I am the only faculty member that is paralyzed at Syracuse. I am appalled that all my students answer no when I ask them if they had ever had a wheelchair user professor. I have been asking this question for 25 years. This is what bipeds don't get. The reason wheelchair users are virtually invisible from the work place and routine social interaction is because the social system and our constructed environment present barrier after barrier to inclusion. Ableism is ever present. I see it but typical others do not. They see a super Cripple. Sorry but no. I forcefully reject that label. I am simply lucky. I had great parents who insured I had every opportunity to live a rich and full life. Shortly after I was paralyzed I knew the world was hostile to my presence. That hostility has not appreciably changed in the last 35 years. Education my father told me was the key to success. Well, I got a world class education and have had led a good life as an academic or public intellectual. Life however has never been easy. I have struggled greatly in terms of employment as the university system nationwide has embraced a business model of education. We live in an era in which the University of Iowa hired Bruce Harreld as president--he of Boston Market fame with no experience in higher education. Other examples abound.

Think about how the ordinary is impossible. Recently I met a visiting graduate student from abroad at Syracuse University. The student wanted to do something ordinary. She wanted to try to ride a handcycle before the weather turns too cold. Now if this student did not have a disability she could have gone to the Onondaga bike trail, downloaded an app and rented a bike for $10 for one hour.  This is what any biped could do without thought. Indeed, any biped could do this each and every time they go on vacation. Enter the need for a handcycle and the ordinary is not possible. I could not find an adaptive sport program that could lend the graduate student a handcycle. It is my hope the student can participate next spring in an adaptive event and access a handcyle. This special event will surely inspire the bipeds who happen to be outside that day just as I inspire people I pass every weekend. To say I am frustrated is a massive understatement. 26 years after the Americans with Disabilities Act was passed into law the ordinary remains impossible.