Blog Spotlight: Disability and Representation, Changing the Cultural Conversation

This is a reprint. Unfortunately, since the original date of publication Rachel Cohen-Rottenberg’s blog Disability and Representation, Changing the Cultural Conversation is no longer available. I was unable to find the essays from which the quotes were pulled but I decided to leave this particular post up on ATIGS as it defines “inspiration porn” and illuminates the history of institionalizing disabled people. -md

I first heard of Rachel Cohen-Rottenberg via writer Rachel Swirsky and, of course, the title of her blog struck my interest. With a Master’s Degree in English and currently working on a second degree in History and Culture with a focus on Disability Studies, Cohen-Rottenberg explores the representation of disability in our culture. She digs deep into our understanding of disability, reveals misconceptions and a general lack of knowledge about its history. For example, in her essay Where Are the Elders with Autism? Reflections Upon Reading Fred Pelka’s What We Have Done, she discusses the institutionalization of disabled people, an issue that has affected her family and a period in our history which has mostly been forgotten.

I have a personal interest in this subject: my great-aunt Sarah, who was autistic and had cerebral palsy, was incarcerated in Massachusetts state institutions for most of her short life and died of tuberculosis in the Foxborough State Hospital in 1934, at the age of 25…. I am always shocked, then, to hear people say that autism is an entirely new condition that didn’t exist in past generations. When I hear such things, I feel as though my great-aunt has been relegated to obscurity a second time.

She goes on to challenge Anne Dachel, an editor for Age of Autism, as “[One] of the people who has been most vocal about the purported impossibility of autistic people existing in large numbers before the current generation…” Dachel “believes autism to be a recent ‘epidemic’ caused by vaccination” because she can’t find middle-aged or elderly people in nursing homes who suffer what is considered severe autism.

Cohen-Rottenberg’s response:

Of course, the idea that someone could go to a nursing home as an elder implies that the person was once a part of a community. It is ironic, then, that Ms. Dachel is looking for people born between 1930 and 1975 — years in which disabled people, far from being integrated into their communities, were ruthlessly segregated from society, denied the right to an education, and consigned to a “disability gulag,” where they underwent enormous suffering, deprivation, and abuse (Pelka 2012, 49).

Another of Cohen-Rottenberg’s essays, which spoke to a truth that I had felt and experienced but could never quite describe, is When Inspiration Porn is Counter-Inspirational.

For those unfamiliar with the genre, inspiration porn consists of the objectification of disabled bodies for the purpose of inspiring able-bodied people. Disabled people are its subject matter, but able-bodied people are its audience. And what should able-bodied people be inspired to do, you ask? It’s simple: they should adjust their attitudes, quit complaining, and go on to achieve great things through hard work and willpower. Of course, the ideology of inspiration porn completely ignores the bigotry, the economic injustice, and the basic human limitations that keep most people from actually being able to do all of those things.

While inspiration porn is used to inspire able-bodied people, it can also be used to encourage chronically ill and/or disabled people. But this sort of encouragement is almost a way to avoid an actual discussion, to listen, or, if used by the chronically ill, a way to mask the really difficult emotions you may be experiencing. “Hang in there!” “You can overcome this!” “Someone else has it worse!” Inspiration porn is everywhere, on every social network, in emails from friends and family, on cards. Those of us with chronic illnesses will recognize these right away. Here is just one example out of thousands:

This is inspiration porn objectifying those with disabilities.

It’s not often that you find such an educated and rational discussion of the way disability is treated and portrayed. Rachel Cohen-Rottenberg’s writing is evocative, provocative, honest, and engaging and there’s always a bit of humor woven into her essays. Her blog posts have helped me understand my own limitations and provided me with a way to discuss the subtle and not so subtle prejudices of those who don’t understand the stigma, implications, and history of what is considered a disability.

It’s unfortunate that her blog and essays are no longer available. However, please read her article Doing Social Justice: 10 Reasons to Give Up Ableist Language or her book Blazing My Trail: Living and Thriving With Autism.