Lous Heshusius taught elementary and high school, both regular and special education, in the Netherlands where she was born and later in the US. In her doctoral work at Indiana University, she studied theory construction and paradigmatic thinking, which led her to take a critical stance against the mechanistic and reductionist underpinnings of the US special education system. This led her to join the Disability Studies in Education movement. Many of her publications outline alternative approaches to mechanistic values and processes in educational practices, and they explore qualitative, phenomenological, and embodied methodologies for research. She taught at the University of Northern Iowa and at York University in Toronto.
Heshusius' work in education earned her the Maris Proffitt and Mary Higgens Dissertation Award from the Indiana University School of Education; A William Evans Fellowship Award from the University of Otago, New Zealand; and a Life Time Achievement Award in Disability Studies in Education from the Conference Committee, Annual Conference on Disability Studies and Education. Heshusius held visiting professorships in Canada, the US, and New Zealand, and held a Distinguished Research Professorship at the University of South Florida.
Meaning in Life as Experienced by Persons Labeled Retarded in a Group Home. A Participant Observation Study. Springfield, Illinois: Charles C. Thomas, 1981
With Ballard K. (Eds.) From Positivism to Interpretivism and Beyond: Tales of Transformation in Educational and Social Research. NY: Teachers College Press, Columbia University, 1986
Co-author, Challenging Orthodoxy in Special Education: Dissenting Voices. Denver: Love Publishing 2004
A book about Heshusius' work, edited by Linda Ware, is in press: Lous Heshusius, The Strong Poet. Critical Voices Grounding Disability Studies in Education. The Netherlands: Sense Publishers
The following articles have been considered most influential:
Freeing ourselves from objectivity: Managing subjectivity, or turning toward a participatory consciousness? Educational Researcher , 1994, 23(3), 15-22
The Newtonian-mechanistic paradigm, special education, and contours of alternatives: An overview. Journal of Learning Disabilities , 1989, 22(7), 403-415
At the heart of the advocacy dilemma: A mechanistic world view. Exceptional Children , 1982, 49(1), 6-13
In 1996, a near fatal accident almost ended Heshusius' life and brought an end to her career in education. She lived with severe 24/7 chronic pain for the first eight years after the accident and with moderate to severe pain thereafter. The challenges and difficulties have been tremendous as they are for anyone who lives with ongoing severe pain.
The two books below are accounts of this life altering journey. These books, published in 2009 and 2017 respectively, took 10 and 7 years to write, as, due to the debilitating pain, Heshusius was able to work only one to two hours a day. They are a labor of love. They represent an attempt to shed light on the tremendously debilitating effects of chronic pain, and on a society and a healthcare system that understand acute pain but profoundly misjudge and underestimate the severe nature and consequences of having to live with chronic pain.
Foreword by David B. Morris
Commentaries by Scott M. Fishman
Chronic pain is a major public health condition that, largely because of its invisibility, remains poorly understood within the healthcare system, by society at large, and even by those closest to the people it afflicts. This memoir renders a stunningly intimate yet critical account of what living with chronic pain is like and does so in ways that could significantly improve how people in pain and practitioners deal with this extremely debilitating condition. Based on journal notes taken over a period of twelve years, Heshusius shows how health care professionals too often ignore, deny, or incorrectly treat chronic pain. She offers cogent suggestions on improving the quality and outcome of pain care, using her encounters with exceptional medical professionals as models. This book deals with pain's dramatic and destructive effects on one's sense of self and identity. It chronicles the chaos that takes place, the changes in personality that ensue, and the corrosion of the ability to attend to day-to-day tasks. It describes how one's work life and social life fall apart, the many encounters with the ignorance of others, and chow isolation takes over. It also relates sporadic moments of happiness and beauty and describes how rooting the self in the present is crucial in managing pain.
From reviews cited in the book:
"Inside Chronic Pain is a scholarly work of storytelling. It is shocking, powerful, challenging, and assaulting. Lous Heshusius pulls us into her story with truth and balance, with unrelenting honesty and forthrightness, without weeping in self-pity."
"Great poets have struggled through time to convey the inner experience of ongoing physical pain--but Lous Heshusius accomplishes that task."
"While her writing is steady, educated, and reasoned, her personal reflections pack a cumulative punch tot he reader."
Experiencing Chronic Pain In Society is a follow up to the highly praised memoir Inside Chronic Pain. The present book is written for those who are in any way in contact with people living in pain in the hope they may gain a better grasp of what the day-to-day experiences of lives lived in pain are like. It is also written for those who live with pain to gain a deeper insight into the often hidden societal, professional and scientific values that people in pain have to struggle against but which nevertheless profoundly shape their lives. Combining analysis and autobiography, this book shows how chronic pain, more than any other illness because of its invisibility, is impacted by a web of societal forces. Pain's invisibility leads to stereotypes and disbelief, to assignment of psychological and psychiatric disorders, to exploitation by insurers, to disbelief by employers, to haphazard medical treatment, and to self-help programs, often steeped in "positive thinking," that minimize the gravity of chronic pain. The need for the political and moral will to bring about necessary changes in perception is tied to the need to bring invisible chronic pain into visibility through ethnography, documentaries, autobiography and other media that use the voices that speak of chronic pain as a basis for professional, social and political action.
From reviews, cited in the book:
“I found myself engrossed in the profound revelations about the world in which I live.”
“It’s terrific to hear the voice of one who not only lives with pain but is able to tease apart the complexity of the experience. Her insights inform how professionals and others might become part of the solution.”
“Heshusius shows how accepted ideas about evidence, professionalism and science distort how a broad array of professionals as well as members of society at large understand --or are unable to understand-- lives lived in pain.”
“People living with pain will find an author who finally speaks with them rather than about them or even for them.”
“Her books have taken me off the path of suicide...”
“Read this powerful book if you want to understand chronic pain.”
Given chronic pain is complex and multifaceted, I hope to hear from readers who can fill in what I may have missed or can provide other helpful feedback. To that end, a feedback/contact form has been included.
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