EVERYONE'S INVITED INCLUDING PEOPLE WITH DISABILITIES

WITH LAURA GRUNFELD

WITH A MOBILITY DISABILITY ADVICE FROM A PERSON AN INTERVIEW WITH DAVID SUSSMAN

David Sussman and I first met in the summer of 2009 while working a small first-year festival in western Massachusetts. It was an adventurous experience complete with a middle-of-thenight campground evacuation because of rising river waters and a naked man on drugs. I learned that David had superb customer service skills and an indomitable, positive spirit.

I had started my event accessibility business 5 years earlier and I asked David if he would like to join my team on other events. David worked with Everyone’s Invited for many years, managing the Access Centers at both the Life is good Festival and at Bonnaroo. Being a passionate music fan, he has volunteered with and attended hundreds of other festivals. For the last 8 years, David has lived in Telluride, Colorado. He is an adaptive ski athlete and instructor, and a disability rights activist.

David retired this year, and I asked him if he would be willing to share some of what he has learned about event accessibility with the event producers from all over the world that read this magazine. David agreed and we spoke over Zoom delving into many aspects of making festivals accessible to patrons with mobility disabilities.

Interacting With Patrons

LAURA: Hello David. Thank you very much for taking time to share your experiences, both as an event professional and as a patron with a mobility disability. Can you tell me about an especially memorable experience you had with a patron when you were serving as the Access Center Manager?

DAVID: Immediately my thoughts go back to 2011. I was in the Access Center, where I was responsible for issuing wristbands that grant people permission to use raised viewing platforms and other services relating to their disabilities.

Two young ladies came into the tent, one pushing the other in a wheelchair. I noticed that the young lady in the wheelchair was an above-knee amputee. I greeted them and asked how I could help. They explained that they were looking for a place to sit and watch the music. We got into a little bit of a conversation. I asked, “Who are you excited to see?” They said, “We’re really here for the whole weekend, but tonight is special because Arcade Fire is one of our favorite bands.” She went on to explain that she was there against doctor’s orders. She was living with osteosarcoma, a form of bone cancer, and she was dying. The doctor told her, “If you play your cards right and follow my instructions you could live another six months.” She said, “Well, doctor, I want to go to a music festival before I die.” The doctor said, “I strongly discourage you. Your health is fragile, and you run the risk that your life will end sooner, maybe as early as weeks, rather than the six months that I could see you living.” She said, “I’m going to take that risk because I want to enjoy the time that I have left. This is a decision that I’m making with my wife and we’re going so that I can see my favorite band one more time before I pass.”

Later that night I went into the music venue, and I bumped into those two young ladies. We sat together during Arcade Fire and we kind of huddled in a three-person hug and just sobbed for thirty to forty minutes. The young lady with cancer kept pointing to the ground and saying, “This is where I want to be. This is where I belong. These are the people I want to make my last memories with.”

LAURA: That is an amazing experience. I also know that not all your interactions with patrons who approach you at the Access Center have been so positive. Some people have non-apparent disabilities like a heart condition. The law protects people’s privacy and prevents you from asking about a person’s disability. How did you weed out those that should be granted permission to use the Access Program services from those that were faking it?

DAVID: I asked very simple questions and let them present themselves to me. A typical conversation might go like this, “How can we help you today?” The patron says, “I want to sit down and watch the music.” “I understand you want to sit down and watch the music. The seating areas are for people with significant disabilities who need to sit down and watch the music. Tell me if you feel this applies to you.” One patron replied, “Why are you being such an asshole?” It was challenging.

A gentlemen came in with his young daughter and he said, “I need a wristband. My daughter can’t see and I want to get her up on the platform so she can see the music.” I said, “Well, no disrespect, but the wristbands for the platform are for people with disabilities. Does your daughter qualify?” He replied, “She’s of short stature.” I said, “Well she’s of short stature because she’s seven, not because of a disability.”

I remember another guy, big hulking dude, who came in and said, “Give me a wristband.” I said, “Why don’t you grab a seat and tell me how I can help you?” “I’m telling you how you can help me, you can give me one of those wristbands.” I said, “The wristbands are for people that are living with temporary or permanent mobility disabilities. It gives them the opportunity to sit in a raised viewing area so they can see the show.” He’s like, “Yeah, I know what it gives me. Are you going to give me the f’ing wristband or not?” I said, “I think at this point, it’s a ‘no’.” He called me a name and stormed off.

First Things First

LAURA: If you’re thinking about attending a festival that you’ve never been to what’s the first thing you do?

DAVID: The first thing I do is go to their website and see what their access program looks like. Where am I staying? Is it a day-pass kind of thing where I’m going home at night? I’ll want to know about accessible parking, bathrooms, and seating. How far will I need to travel once I’m in the venue and what are the grounds like? Is it paved, grass, gravel? Flat or hilly? Are there shuttles? This is the kind of information I need so that I can prepare for the event.

LAURA: Tell me if this is true for you. When I look at the information that is provided on the website, I feel I can tell how much effort they’re putting into their access program. There are some events that will say, “We’re 100% accessible,” and not much else. That is when I have serious doubts.

DAVID: Yeah, I’ll dig in. If there’s a contact person, I’ll get in touch with them.

LAURA: Have you ever had trouble getting through security?

DAVID: I remember being stopped and my bag searched. “What do you have in here?” Very accusatory. I said, “Catheters! And diapers! And wipes so I can clean myself when I go to the bathroom!” And they’re like, “OK, go ahead please, go ahead.” I turned it around on them to embarrass them, “You looking at my diapers and my catheters in that bag?” And everyone’s like, “Oh my God.” And they’re like, “OK, you’re good. Have a nice night. Thank you. Bye-bye.”

LAURA: And just to be clear, is it OK if we put that in the article?

DAVID: Heck yeah. That’s the thing, anybody you see in a chair, for the most part, will have a bag with stuff like that in there.

Entrance

LAURA: Have you ever been to an event where the entrance wasn’t accessible?

DAVID: All the time but I’m pretty good in my chair because I have a chair specifically made for off-road terrain. It’s heavy-duty, mountain bike tires, and the casters are solid rubber. It’s a hunting and fishing wheelchair. I wouldn’t trust a regular wheelchair at an outdoor festival of size. I used to follow the Grateful Dead. I saw eighty-six Grateful Dead concerts, so every time it was with my crutches going up a hill, having somebody piggy-back me across a little creek or something, stuff like that. But you make do. I love my music.

Viewing Areas

LAURA: What experience and advice do you have for producers regarding accessible viewing and seating?

DAVID: An event I attended had a chain link fence around a grass area in front of the sound board where people with disabilities were caged. I’m sorry to say we called it the “cripple cage”. It was horrible.

The solution I like best is a raised platform on scaffolding with bike rack around it to keep other patrons from climbing up. I’ve seen plywood on the ground or a very low platform of maybe 6 inches and these are not high enough to see the stage. Now almost all festivals have a raised viewing platform. I don’t want to stare at somebody’s buttocks. I’m 3’9” in my wheelchair, the platform should be three feet high.

LAURA: I think three feet high is a minimum. Some people are shorter than you. When possible, three and a half or four feet would be appreciated by many. I also feel that we should provide a choice of seating options. A space with the raised viewing platform, set back in the audience where people can get to it, and another place between the stage and the audience so that people with disabilities can be right up front. How do you feel about that arrangement?

DAVID: I’m not necessarily one of the front row people. I’m happier knowing that I can get out in a hurry if I need to, so that back or side viewing platform is better for me. At some indoor venues I’ve chosen to be in the front. It’s a bit smothering because those of us in wheelchairs are surrounded by able-bodied people. If there was a protected area it would make it a lot more doable.

I went to an indoor festival in town. They carried my wheelchair up for me and I hobbled up the steps. “Always happy to see you David” and everybody’s drinking and doing their thing and dancing. I just got pushed further and further into the back. I paid $66.00 to sit there staring at a bunch of drunk asses dancing in my face and getting stepped on, bumped into, and spilled on. I’ve been to this place before and knew what to expect but I went anyway because this was my favorite band.

The anxiety of being lower than everybody that is standing, the looks and such that get thrown my way. Not a mean look, it’s that pity, or nice-to-see-you-out-of-the-house look. When I’m with my girlfriend the look says, “Oh look, two wheelchair people holding hands.” I’m thinking “Let’s get out of here.”

LAURA: If there had been a reserved section up front that was in front of the barricade or bike rack that keeps the audience from storming into the stage, that would just take care of it. As long as there’s a protected route to and from that area so you can get back and forth to the bathroom or get out when you want to.

Toilets

DAVID: The number one issue that I have dealt with for forty-five years of living life with a disability, is my anxiety about bathroom, bladder and bowel issues. If I feel as though I don’t have access to those facilities within a certain amount of time, I lose my mind. I’d rather leave and be disappointed than put myself in a bad situation.

It is important that some accessible toilets be locked. If they are not, patrons without disabilities will stand in long lines to get into them because they prefer the larger toilets. People with disabilities can’t get in quickly and the toilets fill to overflowing. It gets disgusting. My girlfriend and I were at a festival recently where this happened. The staff recognized the problem and cleaned and locked the accessible toilets. They gave us the codes so we could get in.

Crowded Conditions

LAURA: Have you been in any overcrowded situations?

DAVID: We’ve seen all the horror stories of people getting trampled. Living life in a wheelchair can get scary quickly. I was at a music festival in Europe in 1999, still walking with my crutches, all of 110 pounds, 280,000 people. One band had ended, and REM was coming on. They were the biggest thing in the world. I got trapped on a bridge with 30,000 people. I held onto my friend, and I started saying my final prayers. I thought I was going to be trampled. It was terrifying.

Advice For Producers

LAURA: What advice do you have for event producers?

DAVID: The community of people living with disabilities continues to be overlooked and I want to make sure that we’re being

fully inclusive. There’s still some work to do providing services to people living with disabilities. Make those accommodations so that, simply put, bottom-line, all the patrons at an event can have the same awesome experience.

It’s mostly simple accommodations that we need to feel that we’re equal. We want to be included. We don’t want producers to do it because they have to do it. We want them to provide a real service accommodating people that need a little extra help.

Advice For First-Time Attendees

LAURA: What advice do you have for first time festival attendees with disabilities? How should they approach this daunting task of attending their first festival?

DAVID: It’s daunting, for sure. A lot of the information on the websites is very generic, not very helpful. There’s not a person to contact or an email address. It’s very much like “Figure it out on your own.” Patrons turn to social media like Reddit, Facebook, Instagram, and other social media tools. Sadly, some information is more accurate than others, so check with the festival when you can. There’s still some work to be done as far as festivals providing pertinent information that actually helps people, rather than just a blanket statement that says, “We’re accessible.”

Why Go to the Trouble

LAURA: It can be especially difficult for a person with a disability to attend an outdoor event. Why do you go to all the trouble?

DAVID: For me, it’s this unparalleled feeling of joy and happiness that I find when I’m enjoying live music. I was raised in a musical household during a time of great music, the 60s and 70s. My parents were big music people. My brother and sister are older, so I was one of those lucky younger kids who kind of got hooked on music through my brother and sister. Ever since my first concert, which was seeing the band Chicago at the World’s Fair in 1974 in Spokane, Washington, I’ve been hooked on live music and the feeling of freedom and joy and happiness and elation that I feel when I’m listening to bands play.

It’s been a part of my life and will always be a part of my life. I love it. And I’ll put up with a lot to continue doing it. It’s become harder and harder over the years for me, going from an ambulatory, walking with a crutch, and having a few small things that I had to worry about, to now carrying a bag of medical supplies and worrying about pressure injuries to my feet, my buttocks. There is the anxiety of being around able-bodied people almost exclusively, thousands and thousands of them, when I’m in a chair and they’re all towering above. That’s how much live music means to me. I will continue to go to music festivals until I’m in the ground.

Everyone’s Invited, LLC, founded by Laura Grunfeld, is winner of the gold level “Best Accessibility Program,” for the 2018, 2019, and 2022 IFEA/Haas & Wilkerson Pinnacle Awards. Laura writes a regular column helping producers make their events accessible to people with disabilities. She has worked many festivals across the nation and readers can learn more about her event accessibility consulting, training, and production company at www.EveryonesInvited.com and www.linkedin.com/in/lauragrunfeld. Suggest topics or ask questions by writing to Laura@EveryonesInvited.com.

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