May 09, 2006

Still Not 'Getting It'

William J. Peace writes,

Jonathan Cole is a British neurophysiologist, active clinician, and scholar. When I read positive reviews of Cole's most recent book, Still Lives, I was excited. Finally a doctor wanted to move beyond a clinical or medical model of disability, because a purely scientific approach to neurological impairment was not adequate in his estimation!

In Still Lives, Cole wrote that he wanted to know about the lives of people who use wheelchairs without "the doctor patient thing" intervening. I was impressed: Cole wanted to go to people "not with a white coat or a stethoscope, and without any promise to help or assist. I have gone to listen to their lives as they express them in their own time and in their own homes"

The aim of the text was to move "from a view of impairment as tragedy to reveal the possibilities and richness of experience available to those living with spinal cord injury". What could be better, given that public perception of disability is firmly tied to a medical model of disability.?

By the time I finished reading the first chapter, though, two things were clear: first, Cole is a gifted writer and has a way with words. Second, he has written the most overwhelmingly negative book about disability I have read in twenty years. It's morbidly depressing.

Cole's aim was deceptively basic--he wanted to ask people with spinal cord injury the "simple question of what it is like to live in a wheelchair, without sensation and movement in the body". Still Lives is based on interviews with twelve people who have similar (and in some cases identical) spinal cord injuries but different life experiences.

Each of the book's six sections -- Enduring, Exploring, Experimenting, Observing, Empowering, and Continuing --includes the life narrative of one or more people interviewed by Cole, and concludes with a thematic commentary. Throughout the text Cole acknowledges that spinal cord injury has not been a priority of Britain's health care system.

Although he tells us that in England people with spinal cord injuries are often located far away from "mainstream neurology wards and medical schools, in backwaters, hidden -- until recently -- from public gaze," the reasons for this are not discussed.

Perhaps reflecting a cultural penchant for negativity, Cole is unable to grasp that the social problems people with spinal cord injuries encounter are not of their own making. Cole fails to grasp that the stigma, hostility, and social isolation experienced by those he interviewed is not the natural product of their physical deficits but rather a reflection of the inability of society to accept people with spinal cord injuries as sentient and equal human beings.

If Cole’s aim was to understand the social ramifications of disability why did he fail so miserably? I have no doubt that he was influenced by his colleagues who were uncomfortable with his interest in the social life of spinal cord injured people. Medical personnel told Cole that they did not “try to get too deep, for that may lead patients being confronted with something they could not face”. Cole explained “It was not just the doctors who cautioned me against asking people with spinal cord injury about their experiences. Some paramedical staff on the wards said the same thing. It would only make people think too hard about their condition. We never ask… Their sentences tailed off. One physiotherapist said how hard each day had been for her, seeing young men so affected”.

While Cole may have asked the hard questions his colleagues were afraid to ask, he was seemingly unable to make the intuitive leap in logic necessary to understand the social lives of those he spoke to. I think he and his colleagues were unable to perceive paralysis as being anything more or less than a devastating medical problem. Cole’s simply could not perceive the lives of those with spinal cord injury beyond pain management, new discoveries and treatments for the injured body. Thus he lauds people such as Christopher Reeve who he calls “full of modesty and reserve," a man who seemed unable to ever fully grasp what spinal cord injury meant socially.

This fundamental flaw is evident throughout the text: Cole notes that most people without a disability pay little attention to their bodies but "after spinal cord injury the body is absented, insistent, and unmoving, and yet has to be looked after because it no longer functions automatically". He goes on, noting that after spinal cord injury the body must be looked after "consciously, intellectually, and remorselessly"; and concludes that "those with spinal cord injury are condemned to an intellectual interest in their bodies in order to continue their lives.".

While coping with spinal cord injury and its impact on the body is profound, I for one never felt "condemned" in any way. Nor do I think my fellow spinal cord injury brethren have an intellectual or remorseless interest in our bodies. I consider passages such as those quoted above and many others to miss the point with regard to the social impact spinal cord injury has on the lives of people in England and elsewhere. Cole's inability to look beyond the physical ramifications of spinal cord injury highlight the fact.

Because of Cole's approach, Still Lives is a fundamentally flawed text. By the time I finished it, I felt that Cole's interest in spinal cord injury bordered on the ghoulish-- voyeuristic if not downright creepy.

At no point does this book look beyond the physical consequences of spinal cord injury. This failure is ironic in that it is clear Cole deeply cares about the people he interviewed and I would venture to guess he is an exceptional clinician.

Here is the proverbial but: But just because Cole is intimate with the nature of spinal cord injury, its impact on the body and what many other authors have written about it, this does not make him an astute social observer. His fascination with the physical consequences of spinal cord injury is divorced from the symbolic significance of disability.

There's a profound divide between an empowering text such as Robert Murphy's The Body Silent and this text of Cole's. Murphy empowered disabled people, noting that the problems they faced were not physical but social. Disability, Murphy wrote, is defined by society and given meaning by culture and is consequently a social malady.

Cole, however, fails to comprehend the underlying social implications of disability, and puts the onus on disabled people to make nondisabled people feel better in their presence. This can be seen from the dust jacket: "In exploring the creative and imaginative adjustments required to construct a still life [Still Lives] makes a plea for the able-bodied to adjust their views of this most profound of impairments".

I have no doubt Cole deeply cares about people with spinal cord injury, but I lament the fact that, despite his hard work, has missed the essential dichotomy in the lives of those he spent so much time with.

Posted on May 09, 2006