Access Interview – Mariah Dean

13

May, 2019

AUTHOR: Half Access Board of Directors
Category: Interviews

Mariah Dean is a 21-year-old avid concert-goer from New Jersey. She graduated from Brookdale Community College in 2018 with an associates degree in audio production. Now, Dean is taking a year off to focus on her health, which has been on a steady decline for the past few years. When she’s not at a show, she’s talking to her plants over at @mafrigsgarden. She loves video games, retail therapy, and yoga.

Mariah Dean, an avid concert-goer with cystic fibrosis, weathers venue challenges to enjoy the live music she loves.

Photograph courtesy Mariah Dean

When did you start going to shows? Was there any hesitancy because of your disability?

I’ve been going to shows since I was in sixth grade. My first arena show was the Jonas Brothers at Madison Square Garden! Back then—and up until a few years ago—I didn’t worry about not being able to attend shows due to my disability because I didn’t face the complications that I do now.

Talk a bit about your disability and how it affects your experience attending shows.

I have cystic fibrosis (CF). It’s a progressive, genetic disease that mostly affects the lungs and digestive system. People with CF produce thick and sticky mucus that leads to airway and intestinal blockage, tissue damage, and loads of infections. Due to poor nutrient absorption and constant antibiotics, I have really weak bones and joints. I get exhausted easily due to my low lung function, so whenever I go to shows I cannot stand for long periods of time. I have a hard time walking long distances and going up and down stairs. I’ve had CF my entire life, but as my condition gets worse, it hinders my whole experience of going anywhere, really. I’ve also had picc lines at shows, and my portacath in my chest has been accessed while I’ve attended shows in the past too. I have to make sure I’m in a safe area where I cannot be pulled or grabbed; otherwise, my port could be touched and that would be a whole mess.

Have you experienced ableism in regards to having a primarily invisible disability and needing accommodations?

Absolutely. Since CF is considered an “invisible illness,” no one can tell I have anything wrong with me unless I tell them. I’ve had security at venues tell me I’m “faking it” just so I can get special treatment, and I’ve had kids and parents give me a hard time about needing accommodations. A few have harassed me, saying that I’m hindering their show experience. That was an uncomfortable time. I usually don’t pay attention to those people, because they don’t know what I deal with and I’m just trying to have a good time. I know a lot has to do with safety precautions, but I always have the necessary paperwork I need to show that I’m disabled. Only a few strangers have treated me with respect when it comes to needing accommodations, and I’m thankful for them.

Have your experiences with venues improved over time when it comes to ableism/inaccessibility, or have things mostly stayed the same?

Within the past few years that I have been using ADA, I feel like it falls either way. Some places have improved with the way they treat those who need accommodations, whereas some places just ignore the input they receive from the community. I know that it’s a “new” thing a lot of venues are trying to figure out, so I try not to be so hard on them.

How has your experience been with accessibility at venues of various sizes? Is there a difference in accommodations between smaller, DIY spaces and larger venues?

From experience, I feel like small- and medium-sized venues have better accessibility and cooperative staff members, whereas some bigger venues just let whatever happen and whomever take control. Some small and medium venues will set up an ADA area right when you need it, whereas with bigger venues you need to call ahead; otherwise, you’re being inconvenient. I’ve emailed medium to larger venues about their ADA, and all they can provide me with is “Ask a security guard when you get there,” which I think is a bit nerve-racking and unpredictable.

Have lack of accommodations ever stopped you from going to a certain venue altogether?

Yes. There’s a few venues that I don’t think I will ever go back to due to their inaccessibility or the way they treated me when I got there. I think the general bad vibes they give are enough for me to keep my distance.

What’s been your best experience with accessibility?

There are a few! One was at a summer show in Central Park, where the ADA area was a gated-off section right in front of the stage with its own bathroom (glammed-up porta potty if you must) that had seating in a row and a large area for wheelchair room or standing.

Another great experience was in a venue in NJ. It was only my second or third time there, and as soon as I entered the venue I asked a staffer about their ADA offerings and, right then and there, he set up my own roped-off area in the balcony with a comfortable chair that was high enough for me to see. Warped tour in Holmdel, NJ, was also super accommodating, with the help from a very friendly staff and an all-around-amazing person, Emmy Tantuccio.

I also had a great experience in a popular venue in Philadelphia where they had an entire raised section with tables and chairs in the back of the venue for ADA.

What’s been your worst experience with accessibility?

My worst experience was at a big venue in NYC. My mom and I called days beforehand and spoke to someone regarding ADA, and they told us everything would be set up for me when I got there. When I arrived, nothing was set up, and when I told a security guard whom I had spoken to, they told me that person “didn’t exist.” I was then harassed about my disability by two male security guards outside the venue, in front of people in line, insisting that they needed to see my medication list before they let us in. (I didn’t even have meds on me at the time.) Their version of a safe ADA section was two folding chairs off to the side of the room in an area that was slightly raised up. If I sat in the chairs, I wouldn’t be able to see over the railing, and if I stood, the people behind me complained about how they couldn’t see. It was really embarrassing and uncomfortable, and I just felt like an inconvenience to everyone around me. I haven’t been to that venue since.

What can venues do to make your experience at shows as smooth and enjoyable as possible?

I think specifying their ADA offering online would help out a lot. I hate when I have to call a phone that no one answers and just wing it the day of. I also think if everyone was on the same page, it would be less stressful.

Is there anything else disability/accessibility related that you’d like to talk about?

I’ve seen a lot of ADA areas behind opaque railings, and I hope that gets changed soon. Like, why give me a chair if I can’t see if I sit down?

What new albums have you been enjoying in 2019 so far? Are there any artists you’re hoping to see new music from later this year?

I’m loving Berkeley’s On Fire from SWMRS, Pretty Buff by Angel Dust, and Morbid Stuff by PUP, and thank u, next by Ariana Grande is on in the background as I type this. I’m hoping to see new music from Diet Cig and Issues, and I am so excited for the new Prince Daddy and the Hyena record! And maybe the Jonas Brothers, since they’re back!

What’s your dream show lineup?

That’s a tough one! Since this is my dream, I’ll have to go with Joyce Manor, SWMRS, Mitski, and Maggie Rogers!

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