The Body Silent: The Different World of the Disabled

I am always interested in good books on science, medicine, and disability. Two great books on disability are “A Whole New Life” by Reynolds Price (1994); and “The Man He Became – How FDR defied polio to win the presidency” by James Tobin (2013).I just finished another book on the topic: “The Body Silent” by Robert F. Murphy (1986). Rarely can I call a book truly life-changing, but this one had that impact on me. This is my attempt to summarize some of the key points of this extraordinary book, which resonated with my own condition.Robert Francis Murphy (1924-1990) was an anthropologist at Columbia University in New York.He grew up an Irish orphan in Brooklyn, enlisted in the US Navy at age 17 after Pearl Harbor, was discharged in 1946, and went to study at Columbia on the GI Bill. He got interested in anthropology after attending a talk by Claude Lévi-Strauss at Columbia. Lévi-Strauss remained his idol for the rest of his life. He met Yolanda, a Polish-American anthropology student at Columbia, and they were married in 1950 after a few weeks of courtship. His 1952, he and Yolanda went deep into the Amazon to study the Munduruku indigenous tribe for a full year. The couple faced incredible hardships with only each other for practical and emotional support. This was an experience that “made” their marriage, and helped explain the strength of their bond when calamity struck later.In the 1960s, Murphy was a popular lecturer who sometimes drew a standing ovation from hundreds of students.From 1968 to 1972, Murphy was the Dean of Anthropology at Columbia, during a tough period of faculty unrest and student strikes.In 1972, Murphy, then aged 48 and in the prime of his professional and personal life, started noticing strange health symptoms. He had difficulty lifting his left foot, and his gait was labored. The fingers of his left hand would twitch or curve for no reason. Then followed four years that will ring familiar to all neurological patients. He was misdiagnosed; underwent painful, useless and costly tests; and was at times so fed up that he went into denial while his symptoms worsened.Finally in 1976, a neurologist at Columbia-Presbyterian gave him the right diagnosis. He had a spinal tumor that occupied half the length of his spine. He likened it to the “invasion of the body snatcher.” The tumor was inoperable and would continue to grow slowly and inexorably.By 1977, he was paraplegic; and by 1979, quadriplegic. He worked on this book for seven years, only interrupted by health crises and lengthy hospital stays. The book was a NYT best-seller, and received Columbia’s highest award.Murphy was a chain-smoker and an alcoholic. He quit smoking in 1972 when his first neurological symptoms appeared, in the hope that it would make the symptoms disappear. He had started drinking in the Navy during World War II. He drank relentlessly for more than two decades until 1966 when he realized that he was about to lose his job and his family. He quit alcohol cold-turkey and never had another drop. He sees troubling parallels between alcoholics and some disabled people in their temptation to withdraw into isolation, self-pity, atrophy, and severance; and the reorganization of all family arrangements around the alcoholic / disabled person. The disabled person, just like the alcoholic, finds redemption by stopping the “collapse onto oneself”, escaping entropy, and reaching out to others.Murphy chronicles his decline with lucidity and dignity. He is merciless in documenting the effect of paraplegia, and then quadriplegia, on sexual function, bladder function, and motor function.He is unable to drive, to stand, to easily transfer from wheelchair to the toilet, to his bed, to a vehicle. His ability to conduct his activities of daily living is curtailed dramatically. His breath becomes labored which impacts his ability to speak and deliver his lectures. He can no longer go to university cocktail parties where everyone is standing up eating finger foods. His inability to turn in bed causes terrible sores. His view of his body changes completely, from an essential part of his identity and life-affirming activities, to sick apparatus that still barely sustains his brain, the only thing that now matters.Murphy briefly feels suicidal but rules out that option when he realizes the impact it would have on his family.Murphy documents the everyday obstacles on the path of a disabled person, from transportation to housing to employment. Many of these things have improved noticeably since 1986. Murphy was tasked by the President of Columbia to chair a task force to make Columbia compliant with the first ADA statutes. He first declined the appointment, fearing tokenism and futility, but later accepted and threw himself into the work. His group dramatically improved the campus infrastructure for disabled people, using only one-third of its allotted budget. He calls it the only university committee he saw that ever achieved something meaningful.Murphy points out that many middle-aged disabled individuals choose early retirement instead of continuing to face the challenges of the workplace. There are tenacious myths about disabled people in the workplace – that they’re not as productive, that they might repel customers or other employees, etc. – which have been proven wrong by extensive studies. Most evidence shows that disabled people in the workplace are very productive, and their presence quickly accepted and routinized.He outlines the welfare conundrum: many disabled people are pushed into welfare as they cannot afford to work lower-income jobs. By working, they lose disability benefits and supplemental assistance, for an income (and limited health insurance) that cannot cover their large medical expenses. He recommends welfare reform that rewards training and work over idleness and dependency.Murphy is quick to point out the emergence of computers, and the rise of the service economy, as major positive forces for the economic empowerment and productivity of disabled people.His comments on the evolving role of the spouse are both moving and painful. His wife Yolanda becomes a “total caregiver” (while still holding a faculty job at Hunter College). His dependency on her is complete. Yet they continue to love each other deeply and without resentment.Murphy goes into detail into the sociology of disability.The job of a sick person is to get well. The job of the disabled person is unclear. The disabled are strange “initiates” – they have been stripped of their previous identity, but have not yet acquired a new one, and probably never will.Disabled people are still subjected to snub, avoidance, patronization, and occasional outright mockery and cruelty (witness our President-Elect). Able-bodied people generally don’t know how to behave with the disabled. They are awkward, silent, ashamed - all nuances of behavior compounded sometimes by the disabled themselves. Why? We don’t teach our kids to fear or hate disabled people, so something else is at play.One argument is that American culture values independence, self-reliance and autonomy above all. The disabled person contradicts all. We worship physical fitness, beauty and youth. Disabled persons remind the able-bodied of their mortality. We also scapegoat disabled people – “it’s their fault” – as some denigrate poor people or people of color. Murphy points out that spinal cord injuries overwhelmingly strike young, lower-class men in the US. These injuries are caused by vehicular accidents, accidents in the construction trade, gang shootings, and military combat injuries – which all predominantly affect poor young men.Attitudes to the disabled vary by country. The Japanese culture ostracizes the disabled; while the Nordics are very easy-going.We expect the disabled to bear their burden handsomely, stoically, heroically. This is the image FDR carefully cultivated and projected during his triumphant return to politics in 1928.Disability is a great equalizer among disabled people, their kin, and beyond. Disabled people are prone to comradeship and frank revelations. Many disabled people find purpose in working with and for other disabled folks. Murphy also noted a newfound ease and solidarity with the other “outsiders” in his life – he now easily befriended black people, custodians, women who had been standoffish when he was able-bodied. His students started calling him “Bob” and strolling into his office to seek his advice on relationships. Being disabled can make you seem more vulnerable, compassionate and less threatening.In the end, Murphy recommends that disabled people not care about what people think of them. There is no shame and self-injury in disability. The able-bodied person’s prejudice is a mirror of their own problems. There can be dignity, spirit and imagination in disability.Murphy encourages disabled men, in particular, to stay active, to work until the very end. He worked for Columbia until his dying breath. He labored furiously on this book, sometimes twelve hours a day, despite relentlessly declining health. It was worth it, for his spirit and ours.

This is one of my books that I bought and put aside to read later. I don't remember how long ago I bought it but I am certainly glad that I gave it a second chance to read it before discarding it. I am now not planning to sell this book, as it is too important a volume on disability in society, and it certainly applies to the bioethical and eduethical work I do on the side of my 'regular' job of teaching and writing.Murphy is unlike me in that he came upon his disability later in life, while I was born basically deaf and remained that way for the first 13 years of my life before getting a hearing aid at the age of 13. Murphy had to deal with a slow-growing tumor that entwined itself into his spinal cord. Unlike many tumors that can be excised with surgery, his was such that the possibility of removing it also came with the possibility of losing everything else, including his life or the ability to continue to do his important work. Like many of us who have chosen not to take the risk of surgery and who don't believe that to be disabled is worse than to be dead, Murphy worked with and around his progressive disabling and was able to give the world another 15 years of his wisdom in cultural anthropology.This book is a must-read for any person with a disability, no matter when they became disabled. Murphy had the background of an academic anthropologist, with many years of successful teaching and writing for major journals in anthropology and culture. He had also written major books, one of which continues to be used in most universities on women and gender in primitive societies. So in coming into the genre of disability studies, he brought to the field a first-rate mind and ability to write so others can understand difficult concepts.Murphy's book is not the usual autobiography that one usually expects, but rather explores disability (specifically his, but he introduces others and also the culture) without a single shard of either self-pity or 'hey, look at me' attitude that is so often written about in media (where the media puts someone with a disability on a pedestal that is unrealistic of the very real problems that those of us with disabilities face daily). He writes presenting his disablement as a fait-accompli, dealing with the problems as they arose...and in some cases, he ignored his health situation to the point of putting him at risk for infection from bedsores because he was too busy teaching. Like Murphy states, that wasn't courage as often as it was just not wanting to take the time to have his physical body get in the way of what he was trying to do. In treating his disablement with this attitude, he did become the courageous person that he presented to the public...and I wish so badly I had had the opportunity to meet him and hear him speak. Like so many others such as Michael Fox and Christopher REeve, Murphy was a non-disabled person whose close encounters with his own disablement led him to become a voice in a minority that has long been voiceless. He died much too soon, but in giving his last fifteen years of work to physical disabilities in society, he has provided us with an ongoing voice. I certainly intend to use his words and his writing in my work in hopes that it will inspire others as it has inspired me.Karen Sadler

Robert Murphy, a professor of anthropology, wrote this candid and vivid account of his devastating, paralytic illness caused by a slow-growing, invasive, spinal tumour. The shocking effect this had on his status as a member of society was deeply distressing. From an anthropological and philosophical perspective he reflected that the study of paralysis offered a setting for observations of the struggles of the individual against society. He noted that the disabled became 'liminal people' caught in a 'social limbo' and pushed to the margins of society.Robert Murphy did not allow himself to sink into ineria and despair but seized the opportunity to research the world of the disabled and join their struggle to regain dinity and autonomy and to find a way back into society. This is a powerful and instructive book.

This is a brilliant book. I read it to find out more about disability but found it had so much more to offer. The way we view our bodies and the way other people view us. It brings the subject of sociology alive and makes you see its importance as a subject of study. I particularly enjoyed the socio-economic observations towards the end of the book. I would recommend this book to everyone and especially sociological students and say this is how it should be done.

amazing read. Robert Murthy clearly spent a considerable amount of time perfecting this book. it reads smooth, is full of inspiration and emotion. I love his writing style.