Emmy Tantuccio works with all of your favorite bands and helps to make sure you know when they’re coming to your city. She does this (and much more) while also managing her Type 1 Diabetes and autoimmune illnesses. Cassie Wilson, founder of Half Access, met Emmy through Twitter last year because Emmy sometimes tweets about her experiences with chronic/invisible illness to increase awareness surrounding them, and she manages A Will Away, one of Cassie’s favorite bands. Emmy was kind enough to share her time with us and talk about her experiences balancing her health, work, and shows. We hope you enjoy getting to know more about her!
Photograph by Gabby Sully
How old are you now and at what age did you start going to shows?
Where do you live/what area do you typically attend shows in?
When did you get involved with working in music and what are your current jobs?
Talk a bit about your disabilities and how they affect your experience going to shows.
I’ve been Type 1 Diabetic for 14 years and deal with a slew of other autoimmune illnesses aside from that. I went through a few surgeries the past few years to remove tumors, first from my thyroid and then from my chest, because I also live with a rare disorder where I am missing a tumor suppressor gene. I deal with a lot of maintenance for that. Having health issues impacts my experience going to shows because I need to be in tune with how I’m feeling 24/7 if I want to stay safe, and sometimes it can be hard in a high-intensity environment to figure out if I am symptomatic of a high/low blood sugar, or if I just feel weird/fatigued because shows are hot and sweaty and packed and sometimes stressful. My sugar tends to run on the low side because I have a high metabolism and am active, and I can black out or have a seizure if I go too low, which is why I am always so vigilant. Wearing an insulin pump has made my life a lot easier/given me a lot more flexibility, but I still always have to be careful and make sure I know how I feel, have the right medical supplies on me at all times to deal with a low or high or insulin pump malfunction, and that the people with me understand how to help me in case something goes wrong that requires me needing assistance in an emergency. I’m super independent and have always hated asking anybody else for help, but still never know what’s going to happen and have to be ready for anything. I accidentally ripped my insulin pump site out once running into the photo pit at Webster Hall when I was about to be late to shoot Halsey’s set and had to go find a spot in Webster Hall to inject it back in. Not an ideal scenario – but after you go all that way to get to a show and don’t want to miss one of your favorite artists, you figure it out. Warped Tour was so hot a few summers ago and I was so overheated that my pump site came out again, and every time I tried to put a new one back in it would just literally fall out because the adhesive was straight up melting and wouldn’t stick to my skin. I tried four different pump sites (which requires me to inject into my stomach or hip – the needle pulls back on a spring-loaded button, pretty much, and leaves a small piece of plastic in my skin that delivers the insulin to me), and my last one that I brought with me still wouldn’t work. I think I tried about 5 of them, which I never ever go through all of in one sitting. I had to put myself on shots for the rest of the day and calculate how much insulin I needed (the pump usually helps with that), so that was stressful. I made it to watch all my friends and favorites that day but that was insane. If I didn’t have all of my pump supplies on me that day I would have just ended up having to leave or could’ve ended up in an unfortunate situation. Type 1 Diabetes is a 24/7 illness like that, I can never just give myself insulin or have a problem with my pump and then not think about it. If something is off my whole day or night has to stop until I fix it.
Have you ever felt discouraged from going to shows because of your disabilities? Have lack of accommodations ever stopped you from going to a certain venue altogether?
For sure. You end up getting anxiety that you’re going to be far from home and feel like shit, and end up inconveniencing the people you’re with if you don’t feel well. During the times when my health was really questionable (around 19/20), I bought tickets to so many shows I ended up skipping out on because I just did not have faith I was going to go through the night if I had to be standing and exerting myself for that long. I haven’t really avoided a certain venue altogether because of lack of accommodations but I definitely have been more anxious about going to certain venues because of the lack of protocol for assisting people with medical needs.
What has been your experience as someone with invisible illnesses? Have you had issues with people not believing you’re disabled?
Have your experiences with accommodations at venues improved over time as social awareness has grown in general, or are things remaining the same?
For the most part, based off of my experiences with my specific needs, I do think things have gotten better. I admittedly do not always have to deal with standard venue procedures because I’m working or there for my own artists a lot of the time at shows these days, but when I am at shows for fun, I do think security tries to be more helpful. But that’s also speaking more on entry procedure, etc. and less on the actual physical space and setup. I luckily work for a venue that goes the extra mile to make sure people who need ADA seating are safe and have an unblocked view of the stage, but I know not every venue is like that. I think a part of it is that the conversation around inclusivity in music in general needs to expand MUCH further and include fans and employees who have disabilities so that we can continue to improve social awareness, which I feel will continue to then trickle over into making venues safer and easier to access. Venue owners will be forced to think about it when the community gets vocal about it. It won’t be a priority to venues if we don’t make it one. Diversity and representation in music on stage is absolutely, 100% vital to our community and industry – but if fans who have disabilities still physically can’t get into the venue or feel like they can safely watch a show, you still don’t have a diverse crowd in the room, and then we are falling short of what we need to do here. I need more people to care about things like that, making sure venues are safe for people with mobility issues and that if someone says to a promoter or venue “Hey, I suffer from XYZ health problem and I can’t walk/can’t stand for long periods of time, etc.” that their first response is to figure out how to help that person be safe for the show, not be a jerk about it. Everyone deserves to feel good and be safe at shows.
What’s been your best experience with accessibility?
The Red Frog Events team (they are the team behind Firefly) is absolutely phenomenal. Just the best. Festivals are a tough place for someone with health issues, especially when it’s super hot during the day and you’re running around nonstop. I checked in with their team on day 1 of the fest the last year I went that I wasn’t working and they did everything they could to help me. I had undiagnosed rheumatoid arthritis at the time, so my body wasn’t holding up very well, and they drove us back to our car at the end of each night on a golf cart so we didn’t have to make that trek. Shout out to Red Frog Events, true MVPs.
What’s been your worst experience with accessibility?
A security guard at an outdoor summer show I was at had just thrown out a bunch of girls for underage drinking and spotted me with a Gatorade while I was treating a super low blood sugar. I had specifically talked to security on my way in, showed them what I had with me and my notes etc. and they told me I was all good and to have a great time, but this guard came over to me and ripped it out of my hand and just started yelling nonstop, thinking that I was drinking for some reason (even though I was over 21). I was so exhausted at that point and so desperately trying to get my blood sugar up I was just like, here’s my medical ID bracelet, here’s my ID, there’s the security guard that told me I was fine to have this with me, please go away. Awkward for everybody involved. I always make sure I give her a big smile when I see her at shows now. In that moment of treating a low blood sugar on a super hot day, that gatorade is like my lifeline – I don’t necessarily have the time to spare to go wait in line and get something, that’s how diabetics end up passing out or having a seizure.
Has there been anything that’s been harder or different being disabled and working in music?
Theoretically, yeah, it’d probably be a lot easier not having to worry about a low sugar making me late to a meeting, or my insulin pump site failing and giving me a high sugar right before I get on a flight, or all of the other crazy shit that happens to me on a daily basis that I had to figure out how to roll with if I wanted to be successful. But I actually usually feel ahead of the game because having health issues taught me not only how to respect my limits, but how to work smart. I know how to budget my time. I know that I need to sleep, eat healthy food, take time to run and do what I need to do if I want to feel well enough to do what I love, and I will never act like it’s cooler or more glamorous to not do those things and take those steps to try to help my body. Anybody who acts like you’re only dedicated if you’re burning yourself out to prove yourself is full of shit. I do whatever it takes so that I can get up every day and be able to do my job and chase the dream. That’s always what I try to tell people when they’re like “Wow, I wouldn’t be able to handle what you do with your health.” If you love what you love, and you want it badly enough, you end up finding a way. It’s a no-brainer. It was never an option for me. You have to feel well to do well. I might not be able to be physically present as much as I would like to sometimes if I really feel poorly and can’t make it out to a show – but that happens to regular people, too. It’s part of life. We all have to know how to take care of ourselves in this business especially. I feel like I have an advantage because I have self-care so deeply ingrained in my lifestyle.
Any advice for folks who are disabled and interested in working in music?
I want people to understand that there is no shame in talking about what you deal with/being public about it/being honest about it. I found meaning in my struggles when I realized I could help others navigate their own pain through sharing what I dealt with when suffering through mine. You can change people’s lives. You can help make the community more educated and inclusive by being open and using your story as a way to show people that you are strong and that people with disabilities are strong and can still do what they have to do. I’m a very private person. I use social media but I generally don’t post anything negative or really personal – but I make the exception for the health stuff sometimes because I want people to have a better understanding of invisible illness. I started getting IV treatments for my arthritis about a year ago and I’d post about it occasionally on Instagram stories when I was bored and sitting in the chair with the IV in because I want people to get it, and to come to terms with the fact that healthy-looking people still have a lot of maintenance to do sometimes if they want to participate in day-to-day life. I also want people to normalize self-care and healthcare in general – I put my health first and I want people to understand that’s okay, and that it doesn’t make you any less of a hard worker because of it. I live for what I do in music, I obsess over it every minute of every day, but I ALSO prioritize my health management. And that’s okay! Everything I deal with makes me tougher and more prepared to deal with what my professional life might throw at me, and I want any disabled people trying to make it in music to feel that way about what they deal with, too. The hand you have been dealt does not place a limitation on whether or not you can be successful. People who don’t believe in you because they think your health problems are “too much” DEFINITELY don’t place a limit on what you’re capable of accomplishing. Nobody else can place a limit on where you’re going to go, and where your career is going to go. You might have to be more creative about it, more innovative about it, put in more hours of research.. but you can do it.
What would you like to see venues change to better accommodate you, and others who need similar accommodations?
Don’t hire jerks. Don’t be a jerk. I don’t care if there was one kid nine years ago who tried to take an edible into the venue and lied about being diabetic, and told you it was just a brownie, and you were exasperated so you let them do it and then someone found out and you got in trouble, so now you want to make every diabetic kid’s life hell when they come to the venue and say they need to bring their glucose tabs in with them. That is not my problem or any other kid’s problem who has chronic illness but wants to go to the show anyway and has to bring in medical supplies/food with them so that they don’t put themselves in danger in the process. Establish a clear protocol for helping people with medical dilemmas, post it on your website in a clearly marked “ADA section”, and equip your staff with the customer service skills so that they can help these people navigate your venue and have a safe spot in it. Some venues are old. Some venues don’t have a lot of money. I get that. But there are still steps to take that can help make it even a little easier for people who have mobility and medical issues. And if you don’t know what those things are, ASK. Post on your social media. Send out an e-blast. Ask the community what makes it hard to get around your venue and ask them what you can do that would make it easier for them. Starting a conversation is the first step.
Death Cab for Cutie, Jimmy Eat World, Andrew McMahon, A Will Away, The National, Wet, Now, Now, Bleachers, Dashboard Confessional, Bad Suns, The 1975, Nightly, The Neighbourhood, Third Eye Blind, The Maine, LANY, Taking Back Sunday, Manchester Orchestra, Motion City Soundtrack, Phoebe Bridgers, Panic! at the Disco, Fall Out Boy, Catfish and the Bottlemen.. the list goes on.
What would be your dream show lineup to watch (while having all your accommodations met)?
All of the above. With BROCKHAMPTON. And Carly Rae Jepsen. And Dua Lipa. Thanks.
The Half Access mission is to make live music more accessible, and in most of our recent work we’ve focused on the experience of disabled fans attending shows. There’s another huge part of venue accessibility, which is making sure that disabled musicians can access venues. But, before playing shows comes learning an instrument, which can often look different for disabled musicians. I got the chance to interview a few disabled musicians to share their experiences with adapting how they learn and play their instruments in a way that works with their disabilities.
Josh Rosenberg, 24, graduated from UMass Lowell in spring 2017 with a bachelor’s of music in music business. This year marks the first year he has been able to work only in the festival and live music industry, specializing in accessibility, without any side jobs. He’s worked at about 20 different festivals, some just once and some each year over the past four years.
Luciano Ferrara is a singer-songwriter from Albany, NY, who after several years as a solo artist, recently made the transition to full-band supported act, performing as Luciano Ferrara and the Ensuing Disaster. Also a creative writing student at SUNY Albany, he just finished his undergrad thesis on a book he is writing about lumberjack folklore. In this Access Interview, Ferrara talks to us about the unpredictability of type 1 diabetes and his experience with accessibility as a performer.