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Next month I am going to a Disability Pride Parade.  A Disability Pride Parade.  The words feel uncomfortable in my mouth.  But I am going.

The fact that I am going to a Disability Pride Parade is quite the bookend to my journey.  How did this happen – how did I go from a terrible car accident, hating myself and wanting to die, to attending a parade to celebrate?  There is no one moment I can point to that marked the point of crossing over.  There were, however, steps: the time I emailed a textbook author to ask her to include the subject of disability in her next edition of a women’s history book; the day I realized that I did not have to reveal the genesis of my disability to everyone who asked; the realization that I was, all things considered, quite OK, and anyone who saw me as otherwise had their own issues surrounding the concept of disability.  

My movement into a disability identity has come upon me like layers of paint.  I will confess, though, that sometimes I still hate it.  There is pain and fatigue, emotional distress from society’s reaction to my presence, and frustration from trying to make my way through a tangle of programs in order to have a career without losing the things that I absolutely need, such as healthcare.  Despite all this, or, perhaps more accurately, because of the accomplishment of dealing with all this, there is pride.

But does disability pride come only from the ability to deal with difficult things?  Can it come just from having pride in who we are?  I was not born with a disability but I imagine that those who were might have an easier time saying that they are proud of who they are.  Their disabilities are an intrinsic part of them; it had a hand, from the very beginning, in making them who they are today.  (Admittedly, I have not spent much time talking with those who were born with their disability, so please correct me if you have had a different experience.)  What about those of us who acquired them later in life?  Disability has not always been a part of who we are – we have had to go through a metamorphosis, with varying rates of success.  Personally, it took me almost a decade to feel pride about myself and my accomplishments.

Disability pride is about more than just accomplishments, I believe.  It is not only about the things we conquer.  It is a shout out to the world that we are human beings.  Disability Pride is human pride.  It is the acknowledgement that even though we look, act, move, and think in ways that are different than most, we are human.

Disability Pride celebrates the outer facets of human experience; it celebrates that dance that we do out on the limbs of society.  We do not live in the core, safe parts of the world; we live on cliff edges and in between the cracks where there are wonders to be found.  We march to celebrate those found treasures, those journeys, those expeditions where we gather knowledge and little-lived experiences to bring back to the masses.  Our bodies and minds pull us inexorably toward the outer rivers of creativity that are the same tributaries that feed artists, writers and music-makers.  Some of us return as artists ourselves; and still others of us return with jewels in our pockets, not to show but to enrich our inner selves, which inevitably enriches those around us.  God seldom lives in the safe places.

Our parade is a march of detectives, of philosophers, of MacGuyvers.  Counselors walk here, and heart-finders, too.  There is beauty in facing your vulnerability.  We live lives of high risks and high rewards.  

This Pride parade also celebrates the anniversary of the passage of the Americans with Disabilities Act, a set of laws that says Even though disability scares many of you, even though it brings discomfort to you, you must acknowledge us and make room for us, because we are not going away.  Disability is a part of life, and your making of disability invisible is what brings many difficulties to us; you may be able to put your head in the sand about it but we cannot, nor do we desire to.  This is part of our lives, and as such, it is part of your lives, too, because we are all part of the human experience.  

Some, including myself, may say, Disability Pride?  That’s weird.  Yes, it is.  And weirdness is going on parade.

[Disability Pride Parades are being held in Chicago, New Jersey and California on July 21, 2012.  Able-bodied people are invited as well, because it is a part of everyone's lives.]

Originally posted to Laurie Crosby on Wed Jun 20, 2012 at 10:37 AM PDT.

Also republished by KosAbility.

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Comment Preferences

  •  I could never be in a parade like that. (1+ / 0-)
    Recommended by:

    My disability is the least important part of me.

    •  I understand. (3+ / 0-)
      Recommended by:
      jgilhousen, Noddy, FloridaSNMOM

      It is not something that is for everybody.  I'm sure there are plenty of people who are homosexual who would not want to be in a gay pride parade.

      My disability has affected me very deeply.  For others, it is something normal and not a big deal.  To each their own.

    •  I would do it for others. (1+ / 0-)
      Recommended by:

      For those whose journey with disability who have not yet reached acceptance or pride, and for those who still need to learn about living with disability.

      (That sound you are hearing is a paradigm being shifted at Warp Factor Infinity using no clutch.)

      by homogenius on Wed Jun 20, 2012 at 02:08:01 PM PDT

      [ Parent ]

  •  Tipped, Rec'd and Republished to KosAbility. (4+ / 0-)
    Recommended by:
    Noddy, homogenius, FloridaSNMOM, grover

    Thanks for taking the time and effort to let us know about the parade, and your plans to join it.  Say it now, and say it loud, sister.

    (And please watch for Melody Townsel's scheduled KosAbility diary which will go live at 5:00 Eastern today.  /shamelessplug)

  •  I understand why this is important (3+ / 0-)
    Recommended by:
    homogenius, FloridaSNMOM, grover

    and the courage it takes to participate.

    Disability is part of our society that is often shunted aside, hidden, made shameful.  To speak up and say, "It's OK to look different, be different, have different needs, need different accommodations just to be able to be a recognized part of society" is important.

    My heart will parade with you.

  •  I think this is a great idea. (0+ / 0-)

    Too often, we're seen as people who get in the way. I look able-bodied, so I get second-guessed because accomodations have to be made for me. Heck, a few months ago, the second-guesser was someone who really should know better.  He was planning an event and just didnt want to be bothered.

    Disabled pride says, "I stand up for myself. I don't apologize for who I am and what I need." I get it. And the parade is about telling the world that. Makes sense to me.

    I used to belong to a group where everyone had some sort of disability, or had joined because they were affiliated with a person with a disability. It was one of the most interesting, lively, fun groups of people I've ever known. And it was easy to be friends with them because it was a given that they would understand that sometimes, I needed something extra, just like I knew they needed something extra-- even though our somethings extra were never the same things.

    Some day, being a citizen in America will be like being part of that group. It just won't be a big deal to be a PWD. Citizens will accept each other as unique members easily.

    Until then, parades show that we don't belong in hospitals or hermetically sealed hamster bubbles; but we demand to be in public, even if some people are uncomfortable looking at imperfect bodies. Ha! Like most able-bodied bodies are perfect!

    As for explaing your disability to people, my approach is to smile nicely and tell them that "I only share medical information with my husband, my doctor and whoever pays my medical bills"....and if they're really obtuse, I'll add, "you don't look like my doctor and you sure ain't my husband. So are you offering to pay?

    We owe no one explanations for who we are, why we are the way we are, why we use the equipment we use (including service animals). And my personal feeling is this: every time I explain, because I don't feel like being confrontational or maybe the person seems nice if nosy, others may be watching. So it makes it likely that not only THAT person but others may think its ok to intrude upon the privacy of the next PWD they encounter. It's not so long ago when people felt it was ok to just take the handles of a wheelchair and push it without even asking the person inside if they'd like help (thankfully, most people understand how rude that is now). But there's still too much infantilism that goes on wrt people with disabilities, and invading privacy is a big one.

    So my rule is, no explanations to strangers who barge in demanding them. Ever.

    As for me, my disability is a curse and a gift. It has changed how my husband and I live our lives. There are days that I scream how unfair it is. But most days, we just carry on, because honestly, what else can we do?

    © grover

    So if you get hit by a bus tonight, would you be satisfied with how you spent today, your last day on earth? Live like tomorrow is never guaranteed, because it's not. -- Me.

    by grover on Thu Jun 21, 2012 at 12:17:35 AM PDT

    •  I have had (0+ / 0-)

      quite a few people grab my chair and start pushing without warning -- unfortunately, that still happens!  I've got another entry in my diary called "the fare" that you might be interested in.  I talk about my reactions to strangers asking me about the cause of my disability.

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