2014 Disability Pride Parade: Love Life, Live Green

Access Living Float in the 2014 Parade

This past Saturday, July 19, was the 11th Disability Pride Parade in Chicago.  I've been a part of most every parade in Chicago, since the inaugural parade in 2004.  In the early years, I got more involved in organizing the event.  For about four or five years, I focused on organizing the Parade Open Mic, an event held the night before the parade.  For the last two years, I wasn't involved in any way with the organizing, and only marched in the parade.

This year, I was invited to serve as the Grand Marshal. This means I got to lead the parade and say a few words at the Post Parade Celebration.  Earl Smith, a long-time volunteer for the parade, told me I had been selected to serve as the Marshal.  When he did, he informed me that I had the option of walking the parade route or riding in a convertible.  After a split second, I blurted out, "convertible."

A performance at the Post Parade Celebration

It was a thrill to serve as Grand Marshal.  When I arrived at the parade line up on Saturday, Chuy, a well-known disability advocate in Chicago and a volunteer at this year's parade, kept checking in with me, asking if I needed anything.  Sometimes he'd follow me around the block as I walked around, saying hello to people and checking out the line-up.  If we came up to a group of people, he'd shout out, "Parade Marshal coming through."  He also flanked me along the parade route and would shout out "Let's hear it for Parade Marshal Gary Arnold." Chuy also scolded me for not showing up at AccessChicago on Thursday.  He said it was my responsibility as Marshal to show up at disability related events during Parade Week.  It was nice that someone took the role very seriously. 

LPA Contingent at the Parade

I was pretty excited to ride in the convertible, but it never showed up yesterday. I don't know what happened.  I thought I would be given a sash to wear also. No one could find the sash.  So with just a few minutes before the parade, I stood at the step-off point with nothing to show I was Grand Marshal.  Lucky for me, a concerned peer of mine dashed off to the store and picked up a tiara.  Not what I expected, but it did the trick. 

It also helped that Katie marched with me. Originally, she was going to cheer from the plaza at Madison and Dearborn.  But she walked with me instead, which was great. 

Everyone should get a chance to serve as parade marshal, especially for the Disability Pride Parade.  It's an honor, not just to be picked, but to be able to represent and lead the community. 

So many thanks to everyone who was a part of the parade on July 19, and to everyone who supported me in my role.

Here is the Grand Marshal with the Grand Lady-Katie

Below is the speech I gave during the program celebration.

The 2014 Disability Pride Parade

July 19, 2014

Grand Marshal Remarks

In Chicago and around the country, as members of, and as allies with, the disability community, we often talk about choices.  When I was new to Access Living, a colleague explained to me that independence doesn’t mean doing things by ourselves.   Independence is about making choices for ourselves, having access to a wide range of quality choices, and controlling our own lives. That concept applies to every issue we face.  It applies to housing, an issue about which every day the work continues to increase opportunities for people with disabilities to find a decent place to live that is in an integrated community, that is accessible, and that is affordable. It applies to health care, where around the country we continue to push for a system in which all people with disabilities, no matter the type of disability, have quality options to receive supports in their own home in the community instead of an institution.  It applies to employment. I applaud Governor Quinn for signing the Executive Order on Employment First.  I applaud employment advocates from Illinois and around the country. With their leadership, we move closer to a system in which people with disabilities have real employment options and employment supports, and we move farther away from a system in which people with disabilities are funneled into subminimum wage workshops.

And that concept applies to disability pride.  It’s an honor to be on stage as the Grand Marshal today. Ten years ago, for the first parade, I was the registration coordinator. I spent all my time drawing up diagrams with possible scenarios of how all the different groups would line up for the parade.  The next year, I was a parade co-coordinator with Janice and with Laura.  Dan Van Hecht, who the Van Hecht award is named after, did all kinds of work for the parade that year.  He once gave me a ride home on a Saturday afternoon after a long meeting.  We stopped at a hot dog stand and he started talking about this book called Love Languages.  As we stood next to the stand, eating our hot dogs, he asked me, “What’s your love language Gary?”  

That same year, I had a crisis with Union Park because the Parade conflicted with the Pitchfork music festival.  When I had no idea what to do, from out of nowhere, this new volunteer appeared who happened to be an expert in negotiations.  She spent what seemed like two days in a row on the phone with the Park District and somehow worked it out for us to stay at Union Park.  

Every year, the parade happens because a group a volunteers finds a way to make it happen.  They do so because they want to give people in Chicago and people around the country a time and a space to celebrate their pride as people with disabilities and their pride as a community.  Before 2004, there wasn’t a place and a space for people to come every year to celebrate as a community.  The volunteers of the disability pride parade give the community that option.  And now, because of their work, those options are growing.  Other places around the country are hosting disability pride parades.  

Pride may not be as tangible as housing or transportation, but it many ways it is just as important.  

Why is it important?  A few years ago at the parade I met a young woman from Michigan.  She had never been to the parade before.  She explained that no matter what, she just had to get to the parade.  She needed a space where she could be with the community and celebrate her disability identity. The parade gave her that space.

And it’s important for people like me.  Often when I walk down the street I have to carry a shield that protects me from the people who ask silly questions or want to take my picture. Today, I can put that shield away and walk unthreatened up Dearborn.

That’s why pride is important.  And it is the parade that gives us an avenue to celebrate pride every year.  

So today, as we celebrate the 10th Anniversary of the Disability Pride Parade in Chicago, I salute the Disability Pride Parade Volunteers. Many of them have worked on the parade almost every year. They do it, not to get paid and not to get an award. They do it so that all of us can come together as a community once a year. Because of them, the parade will be here, year after year.  

Thank you all so much for being here today, and thank you all so much for having me serve as the Grand Marshal. Happy Parade Day.  Thank you.

Inspiration outside a coffee shop at LaSalle Street and Chicago Avenue

Two days ago, a colleague of mine and I met with the person who runs disability services for North Park University in Chicago.  The disability service person also happened to be a long-lost friend of mine who I hadn't seen in probably ten years.  Because the meeting was probably going to cover than just business and disability, we met at a coffee shop a block away Access Living rather than at the office.   After about 50 minutes in the coffee shop, we headed back to Access Living, where I was going to give Drew, the North Park employee, a tour of Access Living.  Just outside the coffee shop, at the corner of LaSalle Street and Chicago Avenue, a woman approached us.  As she did, she looked right at me.  She had short, cropped, blonde hair, and she wore a white tank top and shorts.  When she spoke, she spoke with an Australian accent.  I don't remember what she said, but the words were full of what the disability community calls inspiration porn.  She said something like, "Oh my god, you are so awesome. I want to give you a hug."

I looked back at her and said, "You don't know me." 

She then explained that she had a friend who was super awesome.  I assumed that her friend is a dwarf and because I also am a dwarf, she drew the conclusion that I am super awesome. At that point, I told her that her words and actions were insulting.  It is nice and all if someone thinks you are super awesome, but I want to earn whatever awesomeness I have.  I don't want it handed to me on a platter simply because of my dwarfism. 

By now, the light had turned.  My group began to cross the street, and the young woman in the tank top started to drift in the opposite direction down the sidewalk.  Her face lost a little bit of the enthusiasm and her eyes betrayed disappointment.  But she didn't give up on me.  Her final words were, "My friend has done so much, and I know that you can too." 

"Maybe you can as well," I said. To this, she nodded, turned her head away from us, and went on her way down the sidewalk.

The experience was unexpected.  It is not uncommon to confront challenging situations on Chicago Avenue.  There is one woman who I've run into at least twice who is shocked every time she sees me and runs away in fright. Another time someone exclaimed to her friend, when I was but ten feet away, that I was the first midget she had ever seen.  Other people of short stature may or may not agree, but sometimes, based upon the look in someone's eye, you can tell how he or she will respond to dwarfism.  The Australian with the white tank top caught me completely by surprise. 

The worst part of the experience is that she is going to tell her friend, who again I assume is a dwarf, about the bitter dwarf she met in Chicago.  But the best part about the experience is that Carrie and Drew were with me.  Carrie and I work together.  We don't share the same disability, but she has had her fair share of encounters on the street based on stigma and prejudice against disability. The specifics of those encounters are often different than mine, but the themes overlap and we can relate to one another. So she knew right away what was going on, and what I would be feeling. 

With Drew, we joked afterwards that it was as if we had staged the whole thing.  In the coffee shop we talked about ways that North Park and Access Living could collaborate in terms of raising awareness about disability.  In the course of that conversation, Carrie and I stressed that stigma and  prejudice toward disability can sometimes be more of a barrier than any physical or programmatic obstacle.  What better way to illustrate that point than for a young woman to approach us and engage in a dialogue based upon disability assumptions and bias.  In my memory, Drew took in the encounter with this grin on his face, almost with a look of disbelief.  As we went back to the office and we debriefed on the experience, he said, "I am expecting the hidden cameras to come out at any moment." No hidden cameras, but plenty of entertainment, and things to talk about.