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.
