Why “Nothing About Us Without Us” Should Be Required Reading for Everyone in Higher Education

In his groundbreaking book Nothing About Us Without Us, published in 1998, James Charlton declared the disabled have a culture, an extensive one, and that time is up for able bodied people to be making decisions about the disabled without their input. In one of my favorite passages Charlton writes about the imperatives behind his book:

““Nothing About Us Without Us” requires people with disabilities to recognize their need to control and take responsibility for their own lives. It also forces political-economic and cultural systems to incorporate people with disabilities into the decision-making process and to recognize that the experiential knowledge of these people is pivotal in making decisions that affect their lives. Third, while the number of people affected by this epistemological breakthrough is relatively small, a movement has emerged. The disability rights movement has developed its own ideology and politics. It is a liberation movement that is confronting the realpolitik of the world at large. The demand “Nothing About Us Without Us” is a demand for self-determination and a necessary precedent to liberation. Fourth, the philosophy and organization that the international DRM {Disability Rights Movement} embraces includes independence and integration, empowerment and human rights, and self-help and self-determination. The demand “Nothing About Us Without Us” affirms the essence of these principles. Finally, the DRM is one of many emerging movements in which new attitudes and world views are being created. Through its struggle comes a vision that requires a fundamental reordering of priorities and resources.”

Excerpt From: James I. Charlton. “Nothing About Us Without Us.” iBooks. https://itun.es/us/gEPDU.l

Nowadays self-determination for the disabled has grown from a nascent concept to a global movement. From Africa to Asia, Finland to the Middle East, disability activists are not merely calling for their rights but are living their lives in accord with the best principles of independence and empowerment—educating others, assisting their sisters and brothers, demanding opportunities for children, health care, freedom to travel…just to name the basics.

The passage of the Americans with Disabilities Act in 1990 helped create international opportunities for dialogue between the disabled and served to incite a worldwide confrontation with what Charlton calls “realpolitik” but I’m calling “business as usual” because—why not?

What does “business as usual” mean where disability is concerned? Historically the disabled have been segregated, locked up, hidden, euthanized, sterilized, denied educational opportunities, kept out of public spaces, and perhaps worst of all—they’ve been talked over. Their lives are narrated (and mediated) by medicine and rehabilitation programs that always fortify pejorative meanings about disability—not disability as it’s actually lived, but instead reinforcing how it’s understood by the public. Biz as Usual pushes a medical model of disability which designates imperfect bodies, ill bodies, “incurable” bodies as outlier corporealities, things not devoutly to be wished—they become failed patients, abnormalities. Accordingly the abnormal must be farmed out to “special” places which stand at the edge of the fairground where normal people remain happily assembled. Consider the average college campus. Disability is “dealt with” “managed” “serviced” “accommodated” by underfunded offices that in many instances are hard to locate both physically and administratively. I’ve been to many universities where the disability services office is in the basement of a building—reachable only by elevator, or on the top floor of a building, reachable only by elevator—where in the event of fire there’s no way out. I’ve been to campuses where renovations to facilities have left out necessary improvements to make auditoriums accessible; classrooms usable; technology approachable; where there’s minimal or entirely unacceptable transportation for disabled people. These examples are legion and not exceptions. In Biz as Usual disability is conceived as a marginal issue, something that must be grudgingly acknowledged because of the Rehab Act of 1974 and the ADA of 1990, but not as a matter of culture, inclusion, communication, or respect. When college administrations make decisions about the physical or digital agora they seldom if ever consult with the disability communities on their campuses. “Nothing About Us Without Us” should be required reading for administrators, staff, and faculty in higher ed. Of course in 99% of the cases, there’s no required reading for the aforementioned. Faculty know next to nothing about disability, relying on the hidden “special” unit to solve whatever student accommodation request comes their way—and note, accommodation is always narrated as a problem. And so the disabled student is a problem. He or she is defective and trying to get into the happy tent. Faculty Member A resents having to think about this. “Doesn’t someone else handle this?” The disabled must be “handled” —the imagery is perfect given our histories, we’re straight jacketed and dragged away.

At Syracuse we offered the first disability studies courses in the country. We understand disability is part of our diversity and inclusion aspirations. But still we have problems. All too many students, staff, and faculty with disabilities feel left out of important conversations. And we have real problems. Unfortunately, raising them, we’re often made to feel like oppositional figures, malcontents, stylized figures with megaphones, waving our crutches. This should be easy to solve. Invite the disability community “in”—ask them what they think. Employ what I like to call the Ed Koch gambit—“How am I doing?” If the question is sincere it will come after listening. And then we will take positive, culturally engaged action.

Back to James Charlton whose book remains indispensable.

“Life itself is a series of struggles—some won, some lost. Resistance for most people with disabilities is a necessity for survival. The DRM should never lose sight of this. Throughout the course of this project, I have been impressed with how many of the stories and experiences of politically active people with disabilities reflect this proposition. We have begun to speak for ourselves, to make demands, to organize, and to educate others. ”

Excerpt From: James I. Charlton. “Nothing About Us Without Us.” iBooks. https://itun.es/us/gEPDU.l

In the coming years “best practices” in every human endeavor must acknowledge the experiences of the marginalized and embrace the opportunities for education diversity offers.