Welcome to TeaTalks, a monthly interview series where we, Seth Johnson and Olivia Grace Murphy from Flexible Grey Theatre Company, dig into the hot topics in the DFW theatre community and spill the tea. Usually these topics will revolve around the LGBTQ+ community or other marginalized groups in the arts. As a reminder, the full audio is available for the complete TeaTalks experience.
In this episode, Murphy and Johnson chat with Marianne Galloway and Debbie Ruegsegger on the subject of invisible disabilities.
You can listen to the podcast in the player below:
We met with local theatre artist Marianne Galloway and photographer Debbie Ruegsegger on cold Sunday evening to discuss invisible disabilities in the arts. We touched on this topic last month with our guest, Jacie Hood, and were excited to get a deeper dive with these two amazing women. Tea was drank and spilled all around.
This episode of TeaTalks is one of our favorites to date. We were touched by the amount of vulnerability, honesty, and even humor that was in that room. As two able-bodied individuals, Seth and Olivia learned a lot about what invisible disabilities are and how we can better create an artistic environment that supports people with disabilities instead of adding more obstacles.
Invisibledisabilities.org describes the term “invisible disability” as “a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgments.”
The list of disabilities that fall under the “invisible disabilities” category is vast. This extensive list includes chronic pain, chronic fatigue, deafness, mental illness, spinal disorders, diabetes, fibromyalgia, chronic dizziness, and so much more. Individuals with an invisible disability may be hesitant to ask for accommodations or bring up their disability for fear of being judged or labeled as a “diva” or “difficult to work with.” However, society is quicker to acknowledge and accommodate disabilities and injuries we can see. We can see that a wheelchair-using individual needs a seat in a theatre with no stairs. We see that someone walking with a limp should be able to park close to a facility, as opposed to having to walk through a long parking lot. But in our last episode we heard Jacie Hood tell a story where a stage manager refused to get her a chair to sit in when she was having a fibro flair-up. In essence, people are less likely to believe you if they cannot physically see why you would need an accommodation. Even in the medical world, people can be less likely to listen. Debbie has had this particular experience.
DEBBIE: When I started having my seizures... I feel like I was trained to feel bad about telling my doctors about what I was feeling because a lot of them didn’t believe what I was going through. And I finally had a doctor that said ‘hey, listen, I’m your advocate. Whatever you need.’ And it was huge for me, especially in treatment.
MARIANNE: When you expend the amount of energy that I have to expend to compensate in your average job, it becomes normal, but when those accommodations are made it is extraordinary.
TEATALKS: Our wonderful guests were generous enough to share some insight into their unique disabilities. Debbie has an autoimmune disease called “Ankylosing spondylitis” which is an inflammatory arthritis affecting the spine and large joints. In particular feelings of stress affects triggers pain in her body. Marianne is deaf/ hard of hearing, or as she says “lower case d deaf as opposed to Upper Case D Deaf”, because she functions primarily in the hearing world and uses hearing aids.
SETH: What are some of the challenges that you may have to face with other artists who might not understand what you’re going through?
MARIANNE: With my director hat on, it’s a lot easier. I’ve been working in Dallas theatre for almost 20 years and so there aren’t a lot of people on the design side and the producing side that don’t know. And it’s usually something I bring up as soon as I get hired. And I can’t direct without an assistant director because I need someone in the rehearsal process and especially in tech to be my ears for me. Because my sound designer will be like ‘what do you think of those crickets?’ And I’ll say ‘crickets? What crickets? I didn’t hear any crickets.” And so that’s imperative for me as a director. I also at the first rehearsal will make sure to say to everyone at the table ‘heads up, I’m deaf so if it ever seems like I’m not listening to you, it’s genuinely me not hearing you.’ And it is not offensive at all to yell at me, stomp the floor, hit the table, do what you need to do to get my attention because that is part of my life. When I’m an actor it’s a different story. You’re not really in a position [to say anything] when you’re one of an ensemble. What’s easy for me to say as a director is not really easy for me to say as an actor, so I kind of take it one-on-one with individual people.
DEBBIE: I’ve only lived in Dallas for about three years now and I started my journey as an actress here. And within a year I developed my autoimmune disease which really affected my mobility. And I was really very much a physical actress, and sort of comedic relief or there was always some sort of movement involved. And so I sort of had to re-learn my body and re-learn how I can tell stories. And I really had to learn ‘how do I let the person leading this rehearsal room know if I’m hurting? How do I let them know, no I’m not frustrated, I’m just in a lot of pain.” And because my inflammation is in my spine it also affects the way that I see light, and so tech rehearsals are really hard, I’ll start seeing spots. The last play I was in they actually hired an understudy for me which came in handy because the very last night, our closing night performance, I started seeing spots, I was in tons of pain. The understudy was fantastic the audience would have never ever known. So just having someone who makes you feel safe and is willing to accommodate the small things you need like that... That was huge for me. It was a huge lesson for myself as well that not only is it good for my own safety to let people know what’s going on with me, it’s good for other people’s safety as well.
TEATALKS: There were instances where these disabilities made for challenges. But there are also moments of magic.
MARIANNE: I did a production of Children of a Lesser God where I played Sarah Norman who is completely deaf. And so I had to not wear my hearing aids during that show because my hair was back. And so when we went into rehearsals... there was the first rehearsal where I had to take them out and I had to be in a rehearsal environment without what’s become my crutch. And that was particularly magical experience to go through because the show is so deaf-centric that we had two ASL coaches, the entire cast was just very aware and all the accommodations that you could possibly wish for in a situation where you’re doing theatre with a disability were there and it was magical. So when it closed I was devastated. There was this world that I could function at a level that I had never been able to function before and it had to go away.
DEBBIE: I’m a goal setter to the max. I had such a vivid vision of my future self, and maybe that’s what hurt me so bad in the long run. But if you had asked me if there was anything else that I wanted to do in the world I would say ‘no you’re crazy, it’s theatre.’ And now to say ‘no, I’m not a theatre artist, that’s not in my artistic tool belt anymore by choice.’ And I think I got caught up in- there’s this trend now in our society that we’re in where it’s like if someone’s not busting their butt, working constantly, you’re not doing enough. It’s fashionable to be fatigued and to be tired all the time. It was a thing to brag about and I got caught in that and it hurt me and I wasn’t sleeping enough. Having this physical disability as well as a neurological disability with the seizures, my memory started being affected by that, I was finding that I couldn’t memorize my lines as well as I used to. I would be in rehearsal and I would just blank. But I just found that it wasn’t worth my energy and my health anymore and it’s just not the right industry for me.
TEATALKS: Luckily artists are shapeshifters. If something isn’t working, we try something else. In Debbie’s case, this meant exploring a whole new art form.
DEBBIE: I found so much more healing in photography than I ever had in theatre. I can focus my energy on the art that I want to make. And I felt like I was wasting my energy and my health on making someone else’s art that wasn’t really true to myself. And while I love the theatre industry and all the wonderful that are people in it, it wasn’t for me what I think it is for a lot of other people.
TEATALKS: Thank you to our readers, our listeners, our guests, and to TheaterJones for hosting this podcast. Everything these women had to say was incredibly insightful, so we recommend that you check out the entirety of this podcast. We also would like to encourage you to check out Debbie’s photography on Facebook at Debbie Ruegsegger Creative, and keep an eye out of Marianne’s numerous projects around town. And please join us for next month’s TeaTalks. Until then, #ThatsTheTea.