EVERYONE’S INVITED INCLUDING PEOPLE WITH DISABILITIES

WITH LAURA GRUNFELD

WHEN A PERSON WITH DIABETES ATTENDS AN EVENT

Jaime Smilowitz with her son, Alexzander Ellenbogen, in 2013 at the Richie Havens Memorial Celebration in Bethel Woods, NY (site of the original Woodstock). Photo by Alexzander Ellenbogen.

I recently had the pleasure of reconnecting with Jaime Smilowitz when she called me to discuss an event accessibility issue she was dealing with. We first met 10 years ago when Jaime volunteered to serve on the Access Team for an event I was working. She reached out to me because she knows that my company, Everyone’s Invited, works with producers to help make their events more accessible to people with disabilities.

Jaime has insulin-dependent diabetes, otherwise known as type 1, and she wanted to know more about her legal rights under the Americans with Disabilities Act (ADA). She had contacted event staff in advance of attending an event to let them know she would be bringing medically necessary supplies, food, and beverages into the venue. At first, they said no, she could not bring in most of the items she listed.

After putting on her self-advocate warrior hat, Jaime demanded that the event management allow her to bring the life-saving medical supplies she needed. It was an upsetting experience and she wanted to be better prepared for next time.

The ADA requires that events, and other places open to the public, modify their policies and procedures so they do not discriminate against persons with disabilities. I advised Jaime that she should be allowed to bring whatever she needs to manage her medical condition. I also explained that security teams have become more exacting with their restrictions in recent years as they are trying to protect patrons and staff from illicit drugs and weapons. Bag policies often specify clear, plastic backpacks and very small opaque bags inside the backpacks.

This does not work for those who are carrying medication, syringes, adult diapers, and other private medical supplies. To protect privacy, events must allow patrons with medical conditions to bring in an opaque bag of whatever size is needed to hold their medically necessary supplies. Insulin must be kept at a stable temperature so patrons must be allowed to bring a small soft-sided cooler, thermos, or other way to keep meds safe.

I asked Jaime if we could have a conversation about what attending an event is like for her, as a person with diabetes, and share it with you, the reader. Although Jaime is a private person, she agreed.

Why is this an important and relevant topic to event staff and producers? According to the National Institute of Diabetes and Digestive and Kidney Diseases (a department within the U.S. Department of Health and Human Services), 26.9 million people have been diagnosed with diabetes (8.2 percent of the US population). That is a lot of people! Festival producers must assume that many of the people attending their event have diabetes. I think you will find Jaime’s experiences very helpful.

Laura: Hi Jaime, thank you for being willing to be so open about a very personal part of your life.

Jaime: You’re welcome. If my experience can help others, I am happy to share.

Laura: Tell us a little about your daily life and how you manage your diabetes.

Jaime: It’s a complicated answer. It is a minute by minute, hour by hour, day by day, every single day of my life, disease. No two days are the same. I must keep my blood sugars in a certain range (the desired range fluctuates during the day), and I monitor my blood sugars through my continuous glucose monitor (CGM). I wear it on one arm or the other. The CGM tests my blood sugar through a thin metal filament inserted under my skin that is testing the interstitial fluid in my body. I get a reading every five minutes. That, in combination with my insulin pump (also attached to my body), dietary adjustments, and activity considerations assists me in managing my diabetes throughout the day. My CGM sounds an alarm when my blood sugar is changing out of the acceptable range.

Diabetes effects each person differently. No two persons with the disease will be experiencing or treating their disease in the same way. It is a complex disease with needs that change constantly and change under different circumstances. There is no broad brush to explain what people with diabetes need. If someone reaches out to you to say what they need, believe them.

Laura: What are some of the symptoms when a person is experiencing a diabetic issue?

Jaime: There is no standard answer. Each person’s symptoms are different and may vary from high blood sugar issues to low sugar issues. It is a constant juggle to get the balance right to keep in range. Literature states these symptoms include confusion, irritability, shakiness, sweating, double vision, slurred speech, seizures, loss of consciousness, and death. I experience ocular changes, tingling and numbness in my legs, confusion, spaciness, giddiness, difficulty regulating body temperature, and garbled speech. Because symptoms can imitate a drunk person’s behavior, I used to carry a card issued by the American Diabetes Association (ADA), that said “I have diabetes I am not drunk.”

Laura: Let’s talk about how having diabetes makes it difficult to attend festivals and other events. What is the first thing you do when you are considering attending an event?

Jaime: I go online and find out how much it costs, where the venue is, and determine whether I have been there before. If I have, I will know what department or person to call. If not, I begin the process of figuring out who to contact.

I reach out to the venue to find out what the procedure is to come in with the things I need. If it is an all-day event I need to prepare more and bring more. I need to consider the location and proximity to my home and that may add to the list of things I need to bring.

Laura: Please share some of the responses you have gotten when you have reached out to events.

Jaime: In my most recent encounter I was met with tremendous resistance to assist me. I was very clear with my needs down to the type of drink and the number of drinks I needed to bring in because I would rather be prepared then have a medical emergency.

I was told I couldn’t bring anything in and “Don’t argue about the rules with me.” I was asked, “What is your disability that you need accommodations for?” I told her she needed sensitivity training when dealing with patrons with accessibility needs and I asked to speak to a supervisor.

The supervisor got back to me and told me what I was allowed to bring in. I was allowed to bring in one 16-ounce container of juice. “If your blood sugar goes high or low you can have the juice.” I cannot drink juice! You are not a medical professional, and you can’t tell me what I’m allowed to bring in. I’m telling you what I need!

Laura: How did you resolve this issue?

Jaime: We went back and forth. They said you can have one drink. I said “No, I need to bring in more than one drink.” That same person said to me “We have EMTs there should you have a medical emergency.” As if that was supposed to comfort me. You want me to have a medical emergency in order to have my needs met?! I am trying to prevent having a medical emergency!

I was also told I could buy food. This is an unacceptable answer because I need to treat myself immediately and not have to walk a distance and then stand in line to get the food. Speedy intervention is key to averting a medical emergency.

In a past experience, I was not able to get food in a timely fashion. This is why I now prepare so well. It is absolutely frightening when I know that I cannot easily assist myself.

Laura: That sounds like a distressing experience. Please help educate us. What kinds of things do you need to bring, assuming this is a day-long event? Let’s begin with the food and beverage items you would need to bring.

Jaime: Multiple bottles of water, multiple bottles of sweetened iced tea, food that is easy to transport, has carbs, and is small. For example, peanut butter and jelly sandwiches, granola bars, cheese crackers, saltines, hard candies; things that won’t melt

and will survive temperature extremes. I have side-effects from my diabetes so it has to be food that I can tolerate. Other people will have other food requirements.

Laura: What types of medical supplies do you need to bring?

Jaime: I assume everything that I have is going to fail so I bring back-up pump supplies which includes tubing, insertion device, alcohol swabs, insulin, reservoirs, needles and syringes. I bring additional CGM supplies. I also have to assume my pump is going to fail. If my pump fails, I have to go old school and I have to go back to syringes and glucose testing. If I don’t administer insulin very quickly, the sh*t can hit the fan.

Laura: When you say “the sh*t can hit the fan,” what do you mean? How serious is this?

Jaime: Blood sugar can go high very quickly. It is different for different individuals but for some it can go dangerously high in as little as half an hour. When blood sugar is dangerously high one can have a stroke and one can die. One can go into keto acidosis which can lead to death. The opposite situation can also occur, where blood sugar is dangerously low. One could experience unconsciousness, seizures, and death.

Laura: What is it like for you when you go through security screening?

Jaime: Because the insulin pump is a small computer, it cannot go through x-ray or magnetic forces. When asked to pass through metal detectors, I will refuse and ask for alternate screening methods like a pat down or hand wand.

The more experiences I have in different screening situations the more I learn. I get screened at airports, state and federal buildings, and events. What I have noticed is the way in which they search my carefully thought and packed belongings. Sometimes it is searched by hand, either roughly or carefully, and sometimes there is a wand of some sort used to move the items around. The wand method has begun to bother me. I want to be in control of my things. I don’t know where those wands have been and what they have been in contact with. My medical supplies and ingestible items keep me alive. I don’t want to risk my supplies being damaged, or my food being contaminated. I am not a germaphobe, but I am aware.

Here is an example of a screening process gone awry. I was flying and had a special TSA screening scheduled. I told the person, “Do not stroke up my arm. Instead, pat gently”. She did not listen and ripped the CGM out of my arm. I was very angry for multiple reasons. First, she didn’t listen, second, I wasn’t even an hour into my trip, and I already had to resort to my backup supplies and test my blood sugar manually. It takes 2 hours for the CGM to warm up, so it was a minimum of that long to be up and running again.

Laura: What an upsetting experience! While most Security Team members do an excellent job, I’ve heard stories of security taking away medications or medical devices or making the patron talk about their medical condition in front of other people. It can be a frightening experience to go through the search process and interact with security unless they are well-trained and understanding.

Tell us more about other accommodations you might need when attending an event.

Jaime: Here is a list of things I have used and need for my care (it is not an exhaustive list):

1. Because over-exertion can affect my blood sugar levels, it is risky to walk long distances or stand for a long time. I’ll need close parking or transportation to the entrance, expedited entry, a place to sit for viewing the performance, and access to food vendors without standing in a long line should I want to purchase food.

2. Permission to bring my supplies in an opaque bag that works for me. This might be a rolling suitcase, backpack, or multi-compartment bag. Of course, security may carefully search my bag. I would feel more comfortable if I could handle the medical gear myself during the screening, rather than Security touching my supplies.

3. Access to power to charge my phone and my insulin pump.

4. Use of space in a refrigerator or ice for my cooler so I can keep my medication cool.

5. Secure and easily accessible place to store my items so I do not have to carry them around.

6. A clean, private, place to administer medication and change medical devices.

7. The option to get under a tent and be out of direct sunlight.

8. Information about the emergency protocol so I know what to do in an emergency.

Laura: Jaime, thank you for taking the time to speak with me and give such detailed and excellent advice. Many event producers will learn a lot from you.

Jaime: It is my pleasure, Laura. I believe that knowledge is power. I am happy to speak of my private challenges if it can help another person, but also help those that are helping them. I get that producers are concerned with firearms, drugs, and alcohol coming into their event, but think about it - would I bring attention to myself if I was bringing in any of that?

I have had this disease for almost 50 years and a lesson I learned early on is how to advocate for myself. I know what I need, please listen to those needs, and don’t dictate rules that impede my ability to enjoy an event. Make the process as easy as possible for me, not difficult and stressful. It is challenging enough to deal with the daily decisions and adjustments I need to make to live a long healthy life. I don’t need to be harassed when advocating for myself.

Thanks for talking to me. I am hopeful that this will give a little insight to all festival producers. If you would like to talk further, let Laura know and she will make the connection. CARPE DIEM!

CITATION: National Institute of Diabetes and Digestive and Kidney Diseases: https://www.niddk.nih.gov/health-information/health-statistics/ diabetes-statistics

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 att www.EveryonesInvited.com and www.linkedin.com/in/lauragrunfeld. Suggest topics or ask questions by writing to Laura@EveryonesInvited.com. © Laura Grunfeld, Everyone’s Invited, LLC, October 2022.

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