Why I Burned My Book and Other Essays on Disability

American Subjects

by Paul K. Longmore

This wide-ranging book shows why Paul Longmore is one of the most respected figures in disability studies today. Understanding disability as a major variety of human experience, he urges us to establish it as a category of social, political, and historical analysis in much the same way that race, gender, and class already have been. The essays here search for the often hidden pattern of systemic prejudice and probe into the institutionalized discrimination that affects the one in five Americans with disabilities. Whether writing about the social critic Randolph Bourne, contemporary political activists, or media representations of people with disabilities, Longmore demonstrates that the search for heroes is a key part of the continuing struggle of disabled people to gain a voice and to shape their destinies. His essays on bioethics and public policy examine the conflict of agendas between disability rights activists and non-disabled policy makers, healthcare professionals, euthanasia advocates, and corporate medical bureaucracies. The title essay, which concludes the book, demonstrates the necessity of activism for any disabled person who wants access to the American dream.

Genres: Disability, Nonfiction, Disability Studies, Essays, History, Social Justice, Memoir

288 pages, Paperback

First published April 1, 2003

Reviews

[Lightreads · Rating 4 out of 5]

Three and a half years ago, before I started law school, I applied to receive services from my state’s vocational rehabilitation agency. VR will sometimes pay the adaptive technology expenses of students with disabilities so it can be financially feasible to pursue higher education. At a very conservative estimate, the access tech I use for school purposes costs upwards of $10,000, and that’s not counting the potential expense of services (such as a live reader in the library if I can’t get electronic access to something in time) which can run from $10 to $40/hour, depending on the complexity and specialty required.

I’d been through the VR rodeo before in a different state for undergrad, so I was kind of prepared. My first meeting with my case manager went something like this:

Oh, wow, you have a doggie – that must be so nice for you to have a friend! Let’s just fill out these forms – tell me every gory detail of your medical history going back twenty-three years. Yes, of course including all test results, experimental surgeries, and anything else not remotely relevant to your educational prospects. Now, do you have a parole officer, because we'll have to discuss your case. No? Well! Are you sure you want to go back to school? You have a job, after all, why do you want to leave it? [Desire for betterment and career planning not being things that disabled people do, apparently:]. And law school, do you know how hard that’s going to be? Have you really thought about this? Lots of people drop out, you know – lots of people just like you. [The secret code, I assume you guys can crack it:]. Are you sure you don’t have a parole officer?

And then we got into my school of choice, a top-tier, nationally recognized institution I was already accepted to. Why was I going there? Why wasn’t I going to the small local school that had regained (regained, not earned!) its accreditation so recently, it wasn’t even ranked? Did I know that if I went there, VR might consider paying the tiny tuition? How did I know nationally-recognized school was a better school -- I’d just moved here!

I politely suggested that they pay tiny local school’s tuition rates to my school, which was a drop-in-the-bucket, but something, but what I really needed was technology support, so could we talk about that?

It was at that point that there was a stamp put on my file. I don’t know if it was metaphorical or actual, but either way it said something like “noncompliant.” Or maybe “difficult.” Or quite possibly, “uppity.” I never saw a penny of tuition assistance, which I was fully expecting, but neither did I get one scrap of access tech support. And I didn't throw the screaming fit that might or might not have changed that, because I was kind of busy at the time kicking ass and taking names in law school, and racking up debt like no one's business.

This book is about that. That scenario specifically, which is incredibly common (something much like it happened to the author, actually), and the context of institutionalized patronization and controlling ablism built in to our systems, particularly governmental aid programs. Longmore, a historian, first makes the case for why disability historiography is important, then demonstrates how it’s done with a focus on disability efforts to reform government programs starting in the Great Depression. There’s a really disturbing detour in the middle of the book into healthcare policy and euthanasia of people with disabilities, and then we turn back to government aid.

The titular essay, “Why I burned My Book” is this amazing example of combining personal narrative and political advocacy. Longmore burned his book, his very first, outside a government building in 1998. He’d worked on it for ten years, but the government program that paid for the ventilator that kept him alive was going to remove its support as soon as he published – which he had to do, being an academic – because the royalties would count as income. He could either work, or he could stay alive.

This is a powerful introductory book. It’s a collection of essays and speeches written over time, but it’s surprisingly cohesive. I’d recommend it for anyone wanting an accessible background in the social model of disability and a few of the bigger issues that still concern the movement today. This isn’t a book about pervasive interpersonal bias, it’s a book about how that bias gets incorporated into institutional structures from the ground up, and how changing it is almost impossible.

[Kathleen O'Neal · Rating 5 out of 5]

These fascinating, beautifully written essays on disability as the topic pertains to public policy, art, history, and personal identity are amazing work that everyone with even a passing interest in the topic should read.

[R.J. Gilmour · Rating 5 out of 5]

Last night I just finished Paul K. Longmore's Why I Burned My Book and Other Essays on Disability (Philadelphia: Temple University Press, 2003). The book was recommended to me by a former professor while out a social event. In a discussion with colleagues, all of whom are currently employed and doing what they love to do, the discussion of my own work was raised. These days I avoid most social situations precisely because everyone wants to know "what you are doing?" and "how do you support yourself?" Questions that inevitably make me feel awkward and alone. It is hard to answer these questions without feeling a sense of shame and disappointment about my life. Longmore's book a collection of essays about disability studies and how they are changing in the academy opened my eyes. His work seeks to question how society as a whole frames the study of disability as a means of addressing ongoing discrimination.

The essays collected in the book chart not only his contributions to the growth of disability studies in the academy but also how these studies have changed over time. The last essay in the book, "Why I Burned My Book" speaking in a more familiar and subjective tone talks about his experiences as a Phd student and graduate seeking to begin a career in academia while juggling the need to receive financial assistance. Trying to straddle the demands of the academy and those of a bureaucracy is trying for anyone in the academy let alone those with disabilities in any form. Longmore speaks about his experience in great detail and manages to place everything in the larger context of a society that sees disability as a means to hold individuals financially captive. The experience is harrowing and Longmore carefully dissects how such issues are related to larger views of poverty, charity and social welfare.

[Claudia Reinfelds · Rating 3 out of 5]

"This continued a cultural motif in which disabled figures embodied the loss of control and the dependency Americans have found so troubling and have displaced onto outsider figures. Whether represented as menacing or pathetic, physically handicapped people were thereby defined as unfit for normal social roles."

[Matthew Brown · Rating 5 out of 5]

Paul Longmore, my uncle, passed away in August 2010. This will stand, along with his other work, as a testament to the impact he had on our society and how we understand disabilities...and treat those who are disabled.

[Amy · Rating 3 out of 5]

Read for Pathology to Power, Fall 2015.

[Jessie · Rating 5 out of 5]

Must read.

[Libby Moscovitz · Rating 5 out of 5]

I read this for a class, but it was so eye opening and amazing. I think everyone needs to read this book.

[Daniel Burton-Rose · Rating 3 out of 5]

Collection of essays by one of the foremost historians of the disability rights movement.