Caroline O'Brien – Main Character Energy

“I know none of you. I know none of you,” Caroline chants under her breath before she realizes she’s already on a “hot mic.” It’s an endearing moment belying the slightest amount of the jitters, inwardly suppressed, while outwardly portraying loads of charisma, or “rizz” as her generation likes to call it. Caroline is preparing to be a celebrity for the next hour, maybe for the rest of her life.

Caroline O’Brien is an 18-year-old woman in Savannah, Georgia, who has arthrogryposis caused by a tear in her mother’s uterus, which led to leakage of amniotic fluid while she was developing. 

She uses a motorized wheelchair and a mouth stylus to utilize her cell phone. Because of how fluidly Caroline uses technology for her needs, she’s become a constant mentor to others at work for their own technology needs. Yet technology is not where her professional dreams lie.

Caroline is preparing to clock in at the Islands Family YMCA, where she answers phones at the front desk on a more normal day, greets clients, offers building tours, etc. However, on this mild January afternoon, a chaotic throng gathers in the lobby. 

It seems word has spread that Caroline is having a profile written about her, and everyone wants to be a part of it. While other teens and tweens stream past, scanning their membership cards at the desk, half the YMCA staff is here, as well as representatives of Parent Mentors and the Georgia Vocational Rehabilitation Agency (GVRA), waiting expectantly.

The crowd in the lobby waiting to take photos with Caroline in various tableaus might remind you of a high school graduation. Certainly, that was a recent occasion for Caroline. [We’ll get back to that in a second.] The image it more accurately invokes, though, is adoring fans hovering around a stage door, waiting to steal a glimpse, bring flowers, even ask for an autograph.

That energy is something Caroline had better well prepare for.

This summer, Caroline will be quitting her job at the YMCA to attend acting school at the American Academy of Dramatic Arts in Los Angeles. She chose the school because she wanted to be in a place that was as accessible and disability-friendly as possible. 

Sadly, she doesn’t always find that to be the case either in school settings nor in communities in Georgia. Although she’d prefer to make the move completely independently, she knows that will not be possible right away. Her mom is going to move with her for the first year to help her get set up in a new living situation, apply for services where she’ll be living, and then she’ll hopefully be able to hire new direct support professionals (DSPS, or caregivers) to help make things flow from there.

What’s so amazing about this huge transition is that Caroline was in danger of experiencing what so many people with disabilities encounter–the phenomenon known as The School to Couch Pipeline.

For many people with disabilities, the end of high school is a precarious time. While structures like Individualized Education Plans (IEPs), transportation support, and training are supposed to be guaranteed through the public school system, if a person’s family has not been planning for several years before graduation, their services can fall off a cliff. 

Family members can be very busy with their overwhelming jobs. They might not have resources or a solid network or simply not understand that their high schooler’s services won’t continue. A young person is at risk of graduating from high school, where they’ve lived a busy, engaged life, only to come home to sit and stare at the four walls indefinitely.

Caroline entered high school in 2019, meaning nearly her entire experience was overshadowed by the COVID-19 pandemic. Her parents are busy, engaged professionals who did not understand how many years some applications and waitlists can take. 

No one at school or at home was looking out for the fact that her services were about to fall off a cliff when she graduated. Now, Caroline and her family are scrambling to catch up on mountains of paperwork and get her qualified for Medicare and SSDI (Social Security Disability Insurance). Caroline talks about this surreal place she finds herself in, though, where she has to work just enough to qualify for some services but not save too much money so that she disqualifies herself for others. 

As Shavarne White, a GVRA Supervisor, lays it out, it’s a classic case of “Catch-22” because “even people who have income, sometimes it's not enough income to live off of. You can work for twenty years and get a disability check that's not big enough for your mortgage or your rent or you have kids. So it is a delicate balance.” 

She goes on to explain that “people who have disabilities don't want to lose their benefits because they could feel good enough to work part time or full time now and then have a setback in six months, and it takes so long to get those benefits back.”

Caroline does not share those same reservations. When the others aren’t around, her eyes sparkle as she talks about all she loves about the opportunities unfolding before her. Currently, there’s an increase of representation of people with disabilities in pop culture. 

She points to Ali Stroker winning the 2019 Tony for her role as Ado Annie in Oklahoma! as a watershed moment. Caroline invokes another term coined by her generation: main character energy, which is the idea that she won’t be the sidekick or subplot in somebody else’s story. Caroline, referring to yet another one of her favorite musicals, Hamilton, is “not throwing away her shot,” she’s here to be the main character in her own (s)hero’s journey.

As we leave, Therese Nelson, a co-worker at the YMCA's front desk, is left behind while Caroline is whisked away for her many interviews and photo shoots. Therese and Caroline usually work side-by-side, helping each other with their tasks. Caroline explains new technology to Therese; Therese picks up Caroline’s stylus when she drops it on the floor. Does Therese feel bad that she got left behind at the front desk? “She’s a celebrity today. She didn’t need me.”

Look out. A local celebrity today; perhaps much more–coming to a stage or screen soon.