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Wednesday, May 30, 2018

The Failure of Disability Rights Movement

I have been active in and around the disability rights movement since 1978. I was paralyzed at age 18--a few months before I was to attend college. I was hopelessly naive. I knew nothing about disability. I knew absolutely nothing about disability rights. In fact, the idea of disability rights barely existed and was far from mainstream thought. In the fours years I was an undergraduate at Hosftra University in Hempstead, New York I learned much about my paralyzed body, the history of disability, disability rights, and the stigma associated with disability. Unbeknownst to me, I attended the perfect university. Hofstra had a sterling reputation for wheelchair access and had a significant commitment to providing reasonable accommodations to all students who identified as disabled. The campus was the perfect safe haven for me. I could explore a hostile world and return to a safe environment. I quickly joined PHED (Program for the Higher Education of the Handicapped) and the wheelchair basketball team. The real learning, the life-changing knowledge I acquired, did not take place in the various classrooms I went to. The real education took place in the dorms where veteran cripples explained how the world worked. Those four years were hard. The transformation from a privileged white kid to the reality of life as a paralyzed man was harsh in the extreme. My reality remains harsh as it does for all those who claim disability as a central part of their identity. 

Harsh is the perfect word for 2017 and 2018 just as it was back in 1978. To have a disability in this nation is harsh. We have a president that is flagrantly racist and ableist. Recently, the official White House website posted a nearly 500 word "article" "What You Need to Know About the Violent Animals of MS-13". Link:  The word animal was used multiple times to describe MS-13 gang members. Yet again, the President has disgraced himself, the office of the presidency, and the American people. Yes, harsh describes not only my life but the lives of all people that are not white, heterosexual, and have a conventionally typical body.  Difference today is a threat--any difference. I have spent much time thinking how to survive the next few years living in a nation that has embraced hatred and ignorance--much of which is generated by the White House. My dilemma is basic: I do not know what to do. I am not sure others know what to do as well. We are truly in unchartered waters and at a unique and dangerous time in American history. 

Recently read a thought-provoking essay by Leah Lakshmi Piepzna-Samarasinha at Truthout entitled "To Survive the Trumpocalypse, We Need Wild Disability Justice Dreams". Link: This essay energized and depressed me. I was energized because of passages such as this: 

if we're going to survive the Trumpocalypse and make the new world emerge, our work needs to be cripped the fuck out. Our work needs to center disability justice and the activists at the heart of it who have reclaimed "crip" or "krip" as a positive identity, where being sick, disabled, mad, neurodivergent/Autistic and/or Deaf is at the heart of our radicalism.

I was depressed to read the author was:

Sick of single-issue, casually racist white-dominated disability rights movements on the one hand, and of non-disabled Black and Brown movements forever "forgetting" about disability on the other, they decided to create some kind of luscious, juicy movement that would be like what environmental justice was to environmental rights, but in a disability context. 

In recent years I have read similar passages by disability rights activists and scholars. This comment is spot on. The disability rights movement was spurred by white men such as Ed Roberts. Single issues abounded. I readily acknowledge I was and remain a member of the chrome police--a funny term coined by Deaf people who had no interest in wheelchair access that I fought hard for. I get it--the iconic blue wheelchair logo means nothing to deaf people. The fact is the disability rights movement is hopelessly splintered and centered around a medical model of disability. However, I can assure you I never felt white able-bodied privilege when I was an EPVA bus buddy back in the early 1980s. I was spit on by passengers and cursed out by drivers for having the audacity to want to use mass transportation. At least once a year a stranger will comment that death is better than a life with a disability. Segregation and stigma remains rampant. The color of one's skin or gender is meaningless to ableist bigots. 

When I read the above quote I wondered if my time has come and gone. If so, that's fine with me. Let me merely note that being left behind by young disability rights activists hurts. To be characterized as interested in a "single issue" and deemed "casually racist" is counter-productive. I have given my heart and soul to the disability rights movement. I think I still have a lot to offer but if my presence is unwanted so be it. 

I get the future power brokers of the disability rights movement does not rest with white disabled and nondisabled men as it once did (and this was a significant problem). The future as I see it is dominated by females and others who are not white, neurotypical, nor gender normative (here moving away from a gender binary is to the benefit of all). This change excites me beyond imagination. I embrace Sins Invalid, the Harriet Tubman Collective as well as those who are neurodivergent and mad. I whole heartedly agree with the author about disability social justice:

Disability justice means people with disabilities taking leadership positions, and everything that means when we show up as our whole selves, including thrown-out backs or broken wheelchairs making every day a work-from-home day, having a panic attack at the rally, or needing to empty an ostomy bag in the middle of a meeting. It means things moving slowly and being led by people even the most social-justice-minded abled folks stare at. And what holds many social justice abled folks back from really going there is that our work may look like what many abled people have been taught to think of as "failure." It's so easy to look at a list of disability justice principles and nod your head. But the real deal is messy and beautiful -- as messy and beautiful and real as our sick, disabled, Deaf and crazy body/minds. Disability justice, when it's really happening, is too messy and wild to really fit into traditional movement and nonprofit-industrial complex structures, because our bodies and minds have always been too wild to fit in those structures.
This truly resonates as I know I have never been nor will I ever be the image people have in mind when they think college professor or writer. This sentiment is forcefully brought home every time someone asks me if I can read. Stigma stubbornly clings to all those with a visible disability. There is no hiding my wheelchair. My"needs" are ever so special and when the social veneer of acceptance is wiped away deeply resented. When I show up at academic meetings or university campuses I am met with rolling eyes, stony silence, and blank stares. When I ask about accommodations for disabled faculty I might as well be asking when is the next shuttle to the moon. The assumption here is no faculty member could possibly be disabled. No speaker could possibly need a ramp to access a stage. I am told "Of course the meeting is accessible". Yet no one knows where the bathroom is located, where the food set out is totally inaccessible, and the accessible entrance is in an obscure location, and the after meeting decompression gathering held in an inaccessible location. I guess what I am saying is that I am tired of being left behind and excluded. Long ago, I was excluded from accessing mass transit. Today I am excluded from attending academic meetings because they are too costly for independent scholars to attend (independent here means under-employed). My presence on university campuses is less welcoming today than it was when I left for college. I suppose I must just accept Lenny Davis observation that normal and abnormal are created by a certain kind of society. In American society I fit squarely into the abnormal category--something I have railed against for over 40 years. Today, it feels like I will never escape abnormality. Worse, I doubt I will ever be normal or ordinary. That is something I once dreamed of and will not live to see.