Disability Pride Parades celebrate difference, explode stigma and combat shame!
If you did not know that Disability Pride Month came to a close yesterday, you would be forgiven as, in NYC at least, it is only a year old. Mayor de Blasio declared July to be Disability Pride Month last year in honor of the 25th anniversary of the passing of the ADA. In a 2015 article by the NY Daily News, de Blasio was quoted as saying, “The Americans with Disabilities Act is one of the most important civil rights laws in history.”
And yet, although many improvements have been made in education, job opportunities and accessibility, disability seems not to be part of a larger celebration of diversity.
Literary and disability critic Lennard J. Davis puts it like this in his entry “Diversity” in the 2015 book Keywords in Disability Studies:
“Disability would seem naturally to fall under the rubric of diversity. Yet much of the time, when one sees lists of those included under the diversity banner, disability is either left off or comes along as the caboose on the diversity train. One could explain this negligence by saying that disability is just not that well known as an identity category; and that, when it is, disability will then take its rightful place along with more familiar identity markers such as race, gender, nationality, ethnicity, sexual orientation, and citizenship. One could say it will just take time and more activism and eventually people will be educated. Or one could say the problem is structural.”
Davis’ article explicitly takes up the latter thread, arguing that activism might not be enough to allow for disability to be fully embraced in the celebration of diversity.
A major reason for this is the perception that disability is something that, if possible, ought to be cured immediately, and avoided in future generations. Obviously this latter calls to mind some very unsavory issues of eugenics, but the point is that, for most people, celebrating diversity means celebrating a healthy body and mind, whose functions fall within the “normal” range–most people would not wish disability on anyone they loved.
Here again is Davis:
“The idea presented by diversity is that any identity is one we all could imagine having, and all identities are worthy of choosing. But the one identity one cannot (and, given the ethos of diversity, should not) choose is to be disabled.”
If diversity is a kind of empowerment, then disability would seem to represent its opposite. The very word “disability” suggests the powerlessness of limited possibilities for manipulating one’s world. As Davis puts it, “disability seems to be the poster student for disempowerment.”
Before leaving Davis, I’d like to say a little something about him. I first encountered his writings as a grad student studying 18th-century English literature, as that was his original field of interest also. From his work on the early English novel, he came to think about representations of disability in literature and began theorizing a field of study that he helped to create. The first Disability Studies program was founded at Syracuse University in 1994, and since then, many more have blossomed in the US, Canada, and beyond.
In 1996 Davis edited the first edition of The Disability Studies Reader, now in its 4th edition. That book, along with his Enforcing Normalcy: Disability, Deafness and the Body were my first encounters with an academic discipline that connected to my own work in fundamental ways.
Since my late undergrad days, I’d had the idea of studying blindness as both a metaphorical construct and a social phenomenon. Back then there seemed to be few people in the humanities working on disability as anything more than a literary trope., so I was pretty excited when I discovered Davis.
In the years since, I have left a traditional academic path and merely let that training inform and complicate my artistic/writerly work, and have only thought tangentially of my work as being related to the discipline of Disability Studies. Likewise, in the past ten or twenty years, the scope and, dare I say, diversity, of Disability Studies has blossomed. It is this blossoming as well as its difficulties that has in large degree reformed my work, though not my core artistic impulses.
I did not identify with a disabled community until recently–I barely even thought of myself as part of a blind community. A simple explanation for this is that I grew up as a visually impaired person who lived in a sighted world and, for many years, shame was a determining aspect of my sense of self. I launched out of being a visually impaired person (with no visual markers) into looking like a blind person when I was paired up with my first guide dog, Millennium. Even though I was visually impaired and probably could have done fine with a blind person cane, I refused that stigma, thinking people would treat me too differently. As it turned out, the world still treated me like a disabled person for the first time in my life and it made me very angry.
The “somewhat slutty, almost always drunken, angry blind chick shtick” was mine when I first started performing and of the three aspects of that crazy time, I would say the anger and its debilitating effects was most true. My poem, A Pain Named Dog is really about those long years when shame and anger ruled my life. It took many years and a lot of discipline to wrangle the pain into something worthwhile and not destructive.
The first time I embraced the blind cane was in my Yes we have no bananas dance sequence in The Star of Happiness, my one-woman show about Helen Keller’s time performing on vaudeville. Since then I’ve come to love my blind cane (Moses!) precisely because it is so unsexy and symbolic of helplessness, as I wrote about in Exploding Stigma.
I would certainly not wish my long and strange path into blindness on anyone, but I can’t say it’s not been a good learning experience! Likewise, I can’t say I prefer the pain of a long-degenerating eye disease to an imagined life without it, but I will say with Nietzsche, “I doubt that such pain makes us ‘better’ – but I know that it makes us deeper.”
This is all to say that although I am among those people who hope there will someday be a point when there will be no such thing as blindness, disability, degeneration of mind or body, for now, why not celebrate the chimerical nature of human bodies and minds?
That’s why I wanted to write about the Disability Pride Parade movement.
According to A Brief History of Disability Pride parades, the first Disability Pride Parade took place in Boston back in 1990, but they did not continue their pioneering work. Chicago jumped on the Disability Pride Parade bandwagon in 2004 and it is still going strong. Its 13th just took place on July 23rd, 2016. Other cities and towns which hosted (or will host) a Disability Pride Parade in 2016 include Philadelphia, PA (June 11), Trenton, NJ (October 7), and Nacogdoches, TX (April 16).
NYC celebrated its first Disability Pride Parade in 2015, and its 2nd took place this year on July 10. It was started by jazz musician Mike LeDonne, whose daughter was born in 2004 with multiple disabilities. On the DisabilityPrideNYC.org website LeDonne describes his inspiration thus:
“Even though she faces different challenges because of her disabilities she is the most beautiful creature on God’s green earth. It’s through my love for her that I started to want the rest of the world to see what I see and know what I know. One day a few years back, right after NYC celebrated Gay Pride Day, I asked myself why there isn’t a Disability Pride Day? Little did I know at the time that Disability Pride was already a national movement and an international one as well. I found that Chicago and other places already had a parade but not New York City? That just seemed wrong so I started making calls and taking it one step at a time learning as I went…. I’m hoping for a big party that not only celebrates people with disabilities but includes all people. A day to reject able-ism and worn-out stereotypes and replace them with a feeling of pride in who and what people with disabilities really are – just another diverse and beautiful aspect of humanity.”
This year it held the event in tandem with Sicily’s Disability Pride Parade, which perhaps suggests a future where the event will be celebrated internationally, lending it a universal solidity.
There can be no doubt that the Disability Pride parade movement is gathering momentum, but it seems to be in fits and starts. According to the Wikipedia page only 13 cities in the US have ever had a Disability Pride Parade, and sadly, many of these took place only one or two years (especially on the 20th anniversary of ADA in 2010) and then fizzled.
Perhaps the reason for this gets back to the structural difficulties of having Diversity embrace Disability. It sure would be nice if at least each state had a Disability Pride parade and even better if every town and city celebrated with a Disability Pride parade on the same day each year, like the 4th of July!
As the author of What’s Next? What’s the Point? Writes, the popularity of Disability Pride Parades is not a goal in itself, but a necessary step in a larger quest for acceptance on the one hand and self-worth on the other:
“Yes, popularity is important. We are happy to have the abled attend; we want them to attend and even participate. But the reason we want that is for them to hear the messages in those parades about acceptance and inclusion, because these attitudes and actions give birth to civil rights. Popularity serves our political purpose, thus we parade.
Beyond the parade that serves our political purposes with the abled audience lays a disabled audience that serves our social devotions. Ultimately, we parade for other disabled people, for they are our true audience. If disabled people who feel bad about themselves because society has taught them to feel that way see disabled people proudly parading down main street, then maybe they can learn to be proud of themselves as disabled people, and maybe even parade themselves someday.”
Cheers to that!
I knew no disability pride when I was growing into being a disabled person. These days, accessibility and disability seem to be almost hot topics, but not quite. Although There is a growing interest in people with disabilities–from memoires of people with disabilities writing their own life perspective to people with disabilities representing themselves in the media–there is still a long way to go. Marching in a parade with cool outfits, floats and different bodies and minds, is just one more way to enable one’s human power and joy.