Last weekend, I attended Taylor Swift’s Eras Tour at Gillette Stadium in Massachusetts with my nine year old child - a monumental achievement for me, a parent with motor and sensory impairments caused by advanced Multiple Sclerosis. The show was my daughter’s first ever concert, and she had never been to any live event with “just mom.” Due to my disability, I’ve always felt safer having another adult present. But circumstances meant that we could only get two tickets, and I was determined to try to take her myself. The reason I succeeded is not due to my internal strength or any other “disabled hero” trope - it was mostly sheer luck, which if you look close enough, starts to look a lot like white, economic, able-passing privilege. Still, the show was the experience of a lifetime and a core memory for us both.
Always plan ahead and leave yourself more time than you think is necessary: sound advice for everyone, and a crucial rule for many persons with disabilities. I do not normally use mobility aids to get around, but if I know I’ll be maneuvering a long distance or will be in a large crowd (like a concert), I have to plan in advance. I was well prepared for this show, with my rollator, cane, and several arm braces. Packed inside my clear bag were necessary items I might need (valid prescriptions and ID, emergency calories, water, cooling towel, warm item, external phone charger). Parking was easy in the Americans With Disabilities Act (ADA) parking lot, and my child and I had the time of our lives dancing and scream singing along with an entire stadium. While I would like to pat myself on the back for such great planning and execution, I know that more than half of my good experience can be attributed to privilege.
There’s a great article by Carrie Simonelli in the Boston Globe that details the exact way I was able to score tickets. Because it’s paywalled, here’s my short version: a series of sketchy emails from Ticketmaster asked me to choose the maximum amount I’d be willing to pay for two tickets, which would be guaranteed if input my credit card information before ever seeing the seats. It seemed like a scam, but I took the risk. I cannot work due to my disability but my spouse does, and I felt we had the monetary cushion to risk something sketchy from “Ticketmaster.” This ability to take a financial risk is a privilege most of the country does not hold, so it was not “lucky” that the tickets actually came through.
I did get tickets, and here is where actual luck comes in. Our tickets happened to be in the Putnam Club section, a club zone with an exclusive restaurant and special merch table with short lines. There was ample indoor seating to rest out of the sun. I had not asked for any of these luxuries, and I actually paid far less than the normal cost of these seats. I was charged $250 per ticket (I know, I know, make it make sense). It turned out that sitting in club seats was the one factor that allowed me to stay at the concert with my sensory and motor impairments. If we had been in the higher 300 sections, there’s no way I could have walked up and down the stairs more than once, and I wouldn’t have felt safe with my balance and vertigo. Even when I initially scored these prime seats, I was still unsure that I would be the one to take my child to the show. For the better part of the last six months, my multiple sclerosis has been slightly stable at best. My flares are more frequent, and my left shoulder and arm have caused chronic pain so intense that it is sometimes difficult to think during pain episodes. Up until the day of the show, I was still considering sending my spouse or a close friend in my place.
But I wanted, perhaps needed, to go to the Eras Tour with my kiddo. My child was born in 2014, in New York City, at the height of 1989’s popularity. She likes to listen to that record and be reminded that she lived in New York once, as a baby. I told her about how I would listen to 1989 on the subway, and she would kick along in my belly. I was raised in a dancing-singing averse Irish Catholic (or as my Dad would say, Roman Catholic) family, so it is thrilling to watch my child pursue their love of song and dance in choirs, plays, and musicals. Our shared love of Kacey Musgraves, Broadway Musicals, and of course Taylor Swift has been the glue in our relationship - we chat about our favorite tracks and recommend new songs to each other. And we sing together! My initial disability happened in June of 2020, when she was six years old. My flare had been so severe that I was hospitalized for an entire month. It was the height of Covid, no vaccine in sight, and I was in a long-term care facility. To make matters worse, when I got home from the hospital, I was not the mommy she and her brother had remembered. In fact, I was still dealing with the repercussions of a stroke mimicking MS Flare, learning to walk, and sleeping 16 hours a day while my brain recovered. No singing and certainly no dancing.
Just weeks after I returned from the hospital, Taylor Swift released Folklore; a surprise to almost everybody. The album, so raw and acoustic and dreamy, felt like a huge and necessary departure from her usual pop hits. And for me, Folklore felt like a personalized soundtrack to recovery. In “This is Me trying,” Swift observes that she “could’ve followed [her] fears all the way down.” Early recovery from stroke, TBI, concussion, or any number of brain injuries is frightening. And paradoxically, in order to heal, I needed to push through the fear. This is me trying, I would think as I repeatedly pushed a rag weakly across a table. Then in October, when my physical, occupational, and vestibular therapies were not working how I had expected, Swift released Evermore, somehow even more emotional than Folklore.
A line in Evermore’s “Happiness” hit me especially hard back then. Swift sings, “And in the disbelief, I can’t face reinvention / I haven’t met the new me yet.” It’s an understatement to say that I was in disbelief in the months after my flare - I had lost thirty pounds (but you look so good!), lost my job and identity as a teacher, and become a shell of my former self. I felt unmoored in my own body, and the idea that there might be a new me out there was beautiful. I clung to that line during the next two years of intense and grueling therapies. As I mourned the loss of my former identity, I began sharing my story with others and eventually the new me began to take shape. I joined my city’s commission on disability and while I can’t handle a full time job, I volunteer at the school library. I’m forgetful but almost always hydrated. I’ve finally met the new me and I like her - love her, even, when I remember to. She accepts her limitations, and it turns out she’s still trying: disability forces us to try new ways of being in and understanding the world. The new me understands that there is no way I could have attended the Era’s Tour without white, able-passing, economic privilege, and very, very good luck. The new me took their child to her very first concert, danced as much as my aching body allowed, and screamed along to familiar songs with my kid, who spent the entire night beaming.
Erin Ryan Heyneman is a disabled educator, creator, and speaker. She is also a Commissioner on her city’s Commission on Disability. Find the rest of her work here.