Why I Burned by Book by Paul K Longmore

Why I Burned My Book and Other Essays on Disability by Paul K. Longmore

My rating: 4 of 5 stars


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 they’ll have to discuss my 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.





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