Questions?

In 2001, I was in Toronto for the Little People of America Conference.  One day, I was wandering the streets of Toronto alone, looking for a hot dog vendor.  A friend from Chicago had told me that Toronto was one of the only places to find hot dog vendors who sold tofu dogs. The streets of downtown Toronto were busy.  Of the many people on the street, I passed a woman on a bicycle.  Her young son sat in a child's seat on the back of the bike.  When the child saw me, he exploded into a burst of activity, pointing at me, grabbing for his mother, throwing out questions.  The woman quickly passed, the boy turning to watch me as his mother peddled away.  A few minutes later, the woman reappeared, pushing the bike up the sidewalk.  She approached me.
     
"Excuse me?" she asked.  She had an exasperated look on her face.  I stopped and looked at her.    "Would you mind talking to me son for a minute?"

My guess is that the boy didn't stop pestering his mother, asking her questions impatiently and persistently about the small man he had just seen on the street. I don't remember what I said to the boy, but I appreciated that the mother approached me.  It's better to answer the questions then to ignore them, and it's much better to answer the question then to scold a child for asking.  The hope is that, if the questions are answered, especially if the answers come straight from a little person, the child will understand that, besides height and stature, little people are fairly typical.  Next time the child sees a little person on the street, he will treat the person as typical, rather than pestering a parent or treating the little person as some kind of anomaly.  The mother in Toronto probably handled her son's curiosity better than anyone else who has had a question about my stature.

Accessible Platform at Ohio Street Beach in Chicago

That was 2001, 13 years ago.  Since then, no other mother or father has approached me because of their child's curiosity.  Until last Tuesday.  I was at the beach with my wife Katie.  After swim practice with a group called Dare2Tri, I changed, then walked back to the shoreline following a platform that had been built over the sand for wheelchair access.  Walking down the path, I came face to face with a young boy who's eyes bulged when he saw me.  He didn't say anything.  He just stood there, staring.  Later, outside of a beach cafe where Katie and I had just had something to eat, the boy reappeared in front of me. He was with his mother, holding her hand. 

"Could I introduce you to my son?" the mother asked.  "He has some questions."  We all stood there for a few minutes, outside the cafe, talking. 

I can't imagine there is anything easy about parenting. I certainly am not one to give advice about parenting, because I know nothing about it.  But if I were to give advice on the subject of curious children with questions about people who look different, I would say, "Let the children ask questions."  And if at all possible, let the people who look different answer those questions.

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.