Meredith Wells’ room is neat and organized, with not a pillow or book on the shelf out of place. A Van Gogh poster hangs on the wall (matching the “Starry Night” pattern on the back of her custom-made wheelchair), framed pictures sit at her bedside of her and her friends, and a tapestry drapes over a cozy bed.
Wells, a junior pursuing a bachelor’s degree with individual concentration in musical theater, is the kind of person with an inherently commanding and endearing presence that makes a good performer: she holds herself well, speaks clearly and calmly, and laughs the entire time we talk.
Wells is also the first-ever student to perform in a UMass mainstage production, the sexually charged “Donny Johns,” in a wheelchair.
What the FAC?
Wells made a big statement when she published a letter to the Chancellor in the Daily Collegian over a year ago that circulated like wildfire around campus and raised awareness for the “What the FAC?” campaign. It highlighted the lack of resources for UMass fine arts students from the perspective of her daily struggles as a disabled student forced to struggle through the non-inclusively designed Fine Arts Center building.
However, Wells thinks, the most effective catalyst they made was the “virtual tour” YouTube video of the FAC, published around the same time.
In this video, Wells shows her routine journey to get to class, which includes pushing through doors, piggy-backing a friend up several flights of stairs, sitting as she waits for her wheelchair to follow her in a second trip on the dirty, concrete floor, scooting down an entire flight of stairs by herself on her backside, powering up a ramp, simultaneously opening another door, and maneuvering her chair over the bumpy entrance while making sure she does not roll back down the ramp.
While Wells, a pink bow in her hair, is smiling and calm through the entire video, it’s obvious that she is frustrated and impatient with these conditions. But, really, who wouldn’t be? The FAC, according to UMass’ Disabilities Services Campus Accessibility Map, is only partially accessible.
A year later, Wells sees humor in the video.
“If (someone is) trying to look up a virtual tour of the FAC, because some schools have stuff like that … they find this God-awful video of me,” Wells said, laughing. “I think what was so successful about it was we weren’t trying to tell a sob story … it was just straight to the point, real, there was no fluff on that … and you just kind of got to see what I have to do every day to get around and just how ridiculous it was.”
After the pieces were published, Wells and several other campaign members expressed their concerns in a meeting with College of Humanities and Fine Arts Dean Julie Hayes. Wells said Hayes was helpful with explaining logistics and “gave us the edge to know what exactly we have to do to put the pressure on the administration to get these things done.”
She said a lot of changes have been made since the video.
“There was a really terrible ramp to get into the Theatre Department,” Wells said. “And that was a really big struggle for me because I had to get into there every single day. And they renovated that completely.”
Other changes include new floors in the Theater Department’s Cabaret 204 space, new floors and a new ceiling to reduce the echoing in the Upper Rand Studio, a new dance studio in Totman Gym, and a new handicap door button to get into that glass lobby in the whole Fine Arts Center, according to Wells.
The campaign is not over, though.
“There’s a whole list of things that are still a really big issue and I’d really love to tackle, at least get started, get going before I graduate,” Wells said.
“I got a lot of, ‘‘Is What the FAC?’ still a thing?’” she said. “Of course it’s still a thing. Have you not noticed all the changes?”
Wells admitted the campaign has slowed down recently. Those involved have taken a step back in aggressive campaigning, Wells said, because the change is actually in progress.
“We can’t be in their face while they’re making all those changes or they might not want to make them anymore.”
She added: “The hardest part about having a campaign for arts facilities is that all the people that would be interested in it are all artists and artists are always busy creating art.”
Unsurprisingly, implementing large renovations for one of UMass’ largest buildings on campus has not been easy.
The Fine Arts Center, she said, is not on the list of buildings that need to be renovated or reconstructed, as opposed to South College, which is currently under construction and is scheduled to open for the Spring 2017 semester.
“Basically, the biggest problem is that we are the School of Humanities and Fine Arts,” Wells said. South College, which is also part of the HFA Program, is “what’s really on the docket,” she said, even though a lot of fine arts spaces need work.
From a budding to flourishing artist: Where the passion started
Wells graduated from high school in Bridgewater, where she got her early arts education a couple times a week after school at a theater studio.
“All throughout high school, I was acting,” she said. “As long as I can remember, I’ve always been an artist in one way, shape, or form. And it’s only as of recently that I’ve made that realization. As a kid, I always sung around the house and made up dances and made my parents watch them. And they were like, ‘Alright, we’re going to put you into dance classes.’ And my favorite subjects were always music and art.”
In her first show in seventh grade, she was cast as Annie in “Annie,” and loved it.
“I got bit by the bug and I’ve been acting and doing musical theater ever since. There was never a question in high school of like what I wanted to do. I went into high school knowing that I wanted to go to college for musical theater.”
“Donny Johns” is her first performance in a mainstage production at UMass. She is in the ensemble.
“It’s a lot of work. For me, it doesn’t matter what I’m playing, there’s still just as much work put into it,” said Wells.
So far, Wells has done crew work (hair, makeup and props) and directing for other UMass productions, such as “A New Brain” and “Cat on a Hot Tin Roof,” and the UMass Theater Department’s “Play in a Day,” which is where an entire play is written, rehearsed, and performed within 24 hours (Wells was in a production called “Ladies Who Brunch”). She has done work-study in the scene and costume shops where she has built sets, costumes and props for mainstage productions. She played Maureen in Mount Holyoke College’s mainstage production of “Rent” her freshman year. Last semester, she was an assistant director for a student-run production of “Next to Normal.”
Life and artistic performance with POTS
“I didn’t come to college in a wheelchair,” Wells said.
Wells’ condition is called autonomic dysfunction, or dysautonomia, which refers to the dysfunction of one’s autonomic nervous system.
Dysautonomia is an umbrella term for all autonomic disorders, according to Wells. She personally has two branches of dysautonomia: postural orthostatic tachycardia syndrome and neurocardiogenic synchope.
Basically, Wells said, blood does not flow correctly when she stands. Instead of flowing down to her feet and back up to her brain, the blood remains at her feet. As a result, her brain does not get enough blood flow, her heart starts working really hard and then, after awhile, her heart rate and blood pressure drop, causing her to pass out.
Wells can stand – her legs work, for the most part, unless she gets a cold or exercise-induced temporary paralysis attacks.
“If you notice that with POTS, the last word of it is ‘syndrome,’” Wells said, “which means it’s caused by something else. And they don’t know the cause of mine. But whatever is causing the temporary paralysis attacks is what they believe is causing all of my autonomic dysfunction. And that I’m still going through testing after all this time.”
Some weeks, she will not pass out at all. Other weeks, she may pass out five times.
Diagnosing dysautonomia is hard, she said, because it involves your entire autonomic nervous system, which controls everything your body does automatically. Wells has to consider all sorts of inconveniences ranging from hindered academic performance due to decreased blood flow to her brain to digestive issues. Another issue, she said, is orthostatic intolerance, which is not being able to stand up for long periods of time. Heat can induce that as well.
Wells’ symptoms began her first semester at UMass. She would get dizzy and nearly pass out during marching band practices, forcing her to sit down. Confused, she went to University Health Services, who assured her she was probably just dehydrated.
“They kind of just like sent me on my way,” Wells said. “I was like, ‘Okay, it’s not a big deal, just got to drink some more water.’ And then, every so often, it would happen again where I would just get really dizzy and feel like I would have to pass out for what seemed like no reason at all.”
On Christmas Eve her freshman year, she almost passed out at the gym. Unresponsive, she was immediately taken to the hospital where they ran a complete set of cardiovascular tests. Nothing was found to be wrong with her heart.
Nothing happened for a while, until she had another episode during a production of “Rent” that same year.
She was taken this time to the Holyoke Medical Center, where specialists ran her first electroencephalogram test, used to detect abnormal brain activity.
Despite three EEG tests, Wells was misdiagnosed with epilepsy due to her “seizure-like episodes.” These, as the name suggests, misleadingly look like seizures.
“It’s just me passing out and convulsing,” she said. Though brain waves are not affected, as they are in seizures, the episodes led to a misdiagnosis of epilepsy. She began seeing an epileptologist in Boston, who concluded she did not have epilepsy but POTS.
“And I was like, ‘Okay, never heard of it. What’s that?’ And he sends me to a POTS specialist and she’s convinced that I don’t have POTS. She’s convinced that I’m depressed and have epilepsy.”
Wells then got a second opinion, where tests indicated POTS-like and neurocardiogenic syncope-like symptoms.
“I think I’m finally getting to a place where I’m learning how to manage it. Like, I know that if I don’t get enough sleep, the next day’s not going to be good. I’m not going to be able to perform at my best,” she said.
She has to consider drinking enough water, eating frequent small meals, getting enough sleep, and avoiding and handling overwhelming stress, academic or otherwise. When she knows she has a big show coming up, she tries to rest during the day.
The weekend preceding “Donny Johns” included two twelve-hour rehearsals.
“I think that, when all of this started happening, I kind of had this moment like, ‘Is this possible? Like, can I do this? Can I make this a career with this disorder?’ And I’m still not sure if it’s possible – but we’re going to try,” she said.
Right now, she does not have a specific career path in mind, besides making art.
“I want to perform. I know that,” she said. “I only know a few things to be true. I just want to be making art, in some way, shape or form, with people who are passionate about working with disabled artists. That’s the dream.”
She also wants a job that allows her to travel, but does not have a specific place in mind. She said she wants to experience more cultures to improve her acting.
And she believes majoring in musical theater through BDIC has prepared her for anything in the entertainment industry, whether it is singing, acting dancing or doing all three at the same time.
Weight on the shoulders
Wells said she is part of a very small demographic of performers in wheelchairs.
“It’s a very small world, but a big stride has definitely been made.”
She mentioned Broadway actor Ali Stroker, who is currently performing in the sign language-inclusive musical “Spring Awakening.” Stroker is also in a wheelchair, though not for dysautonomia.
Wells said she has seen interviews where Stroker says the “pinnacle moment of her career” was watching the disabled character Artie from Glee singing and dancing in a wheelchair.
“You didn’t see his handicap. You just saw that he was a kid singing and dancing on (television),” Wells said. “That was the moment where (Stroker) was like, ‘My career is going to be so much different now.’ And now, I see her on Broadway and I think, ‘The rest of my life is going to be so much different now that someone’s been on Broadway in a wheelchair.’ And for me, as much as there are so many similarities between (Stroker) and I, there are so many differences, too. We’re in wheelchairs for very different reasons.”
Wells said Stroker is not necessarily a role model, though.
“It’s not like when an able-bodied person is like, ‘Who’s your role model?’ And they can think of 10,000 people that could potentially be their role model who are in a similar situation. For me, yes, I definitely look up to (Stroker) and am glad that she does everything that she does because it’s opened so many doors for me.”
Wells has yet to find someone just like her.
“I Google and I Google and I Google and I try to find someone who has autonomic dysfunction and is doing theatre or movies or something artistic,” she said. “And there’s really not any – that are openly advocating for it, at least. So that’s one of the things where you look at it and you’re like, ‘Is this possible?’ But I guess we’re just going to find out, you know? That’s all you really can do.
“It’s nerve-racking but exciting at the same time, because you could be on the brink of something really special.”
To use the arts as a platform to spread awareness for autonomic dysfunction, she said, is the most exciting possibility.
The thought of being the first big-time performer or artist with dysautonomia makes her eyes glass over as if looking into a very bright future. She said she hopes this is just the beginning.
The cause is not more important to her than performing in itself, but Wells said knowing that her art could potentially serve as a medium to advocate for a cause is “added motivation.”
“And that’s the thing, it took me so long just to explain to you what I have, whereas if I was like, ‘I have (multiple sclerosis)’ or ‘I have a spinal cord injury’ or ‘I have epilepsy,’ you know exactly what I’m talking about and it wouldn’t take all this extra 10-minute explanation to explain to someone what you have.”
Along with constantly having to educate others on her condition, which affects approximately 500,000 individuals in the United States alone, Wells said adapting to dancing while in a wheelchair has been a lot of work.
“Basically, a lot of what I did was looking at the people who were in wheelchairs and dancing and doing theater and saying, ‘Okay, so they can do a wheelie, and then they can spin around two times. Alright. I gotta be there. I need to be able to do that.’ Or, ‘They can pop off a curb. I need to be able to do that.’ And (I) just slowly learned all these little skills until I can do all these things now, I can do them in time with music, with a cast.”
A world of good
There have been advantages to being in a wheelchair, Wells said.
“When I go into an audition, I know how to use my chair to my benefit. Like, during my audition for ‘Donny Johns,’ there’s one point in my song where I rhythmically slam down the chair. And the director was saying, ‘Once you did that, I knew that you knew how to use your chair and we had something to work with.’”
Wells said a lot of performing in a wheelchair – and a lot of success in life in general – is focusing on what you can do instead of what you can’t.
“Having a disability – and I always call it having a different ability – is not as big of a deal. Because it’s just that: it’s different. It’s not less.”
The advantages for her do not stop there.
“I think, for as much as it’s taken away from me, I’ve gained so much,” Wells said. “I’ve really gained a lot of gratitude for the little things in life. When I can get out of bed and turn off my alarm clock, I’m like, ‘Alright. I’m not too dizzy, I don’t fall on the floor halfway there. It’s going to be a good day.’ Just the little things like that.”
She has also gained a whole community of people with chronic illnesses, including pen pals.
She attributes a lot of opportunities she has recently had outside theater as well to being in a wheelchair, like being a writer for the Dysautonomia Information Network’s website.
She is also a spokesperson for American Medical ID, a brand of custom medical art jewelry that she wears herself that is a stylish leather bracelet with a small metal tag where her name and “neurocardiogenic synchope” are engraved.
“No one’s forcing me to wear it. It’s more of a safety thing,” Wells said. If she passes out unexpectedly, then a first responder can use the tag to expedite whatever help she needs.
“I think it’s really important that people who have a chronic illness have an ID and I think it’s important that people know that there’s not just, like, ugly options,” Wells said. She said hers is aesthetically pleasing enough that people often mistake it for a wristwatch.
Her efforts to spread awareness follow in the shadow of Stroker, who is a spokesperson for Colours in Motion, the company that provided Wells with her wheelchair. Wells said Ernie Espinoza from Colours in Motion helped her get her current custom wheelchair and plans to unite the two actors in the future.
“It’s one of those things that would never happen if I weren’t in a chair,” she said.
Wells pulls out a yellow composition notebook on her shelf to display the rough draft of her current project, a one-woman musical show called “Dysfunctioning Just Fine,” based on her life and her experience of being diagnosed with dysautonomia.
“I’m hoping it will be done by next semester. I think a lot of work will be done over winter break,” she said.
The musical is based on the past couple of years of her life, what has changed, and what she has gained. She hopes the story will spread the message that there is no reason to feel sorry for her.
“I get a lot of, ‘Why are you in a wheelchair?’ and I tell them why and they’re like ‘Oh, I’m so sorry” and I’m like, ‘There’s nothing to be sorry for. I live a wonderful life,’” she said.
The work is collaboration with her friend, Jordan Reed. Wells’ girlfriend, Kate Robarge, is composing the music.
“When I met my girlfriend, it wasn’t, like ‘Oh she’s a girl and now I’m starting to have feelings for her.’ It was like, ‘I’m in love.’ I wasn’t thinking, ‘Oh, it’s a girl.’ I just didn’t think about that.”
Being in a chair, however, has prompted her to think more about her sexuality, a topic she addresses in the show.
“When you’re in a wheelchair, people really put you into that box of being disabled. So when I started using a wheelchair, I really rejected having a label for my sexual orientation. Because I felt like it was just one more thing that people could put me in a box for.”
She said being in a wheelchair stops people from even considering her sexuality.
“They don’t even think past the wheelchair to the point to think, ‘She has a sexual orientation. She could be sexy.’ These aren’t things people are thinking about when they think of someone in a wheelchair, generally.”
The whole struggle, she said, strengthened her sexual identity.
“And when people would ask, ‘Well, are you gay? Does this mean you’re gay?’ I was like, ‘I don’t know. But I’m in love. So what does it matter?’” Being in a wheelchair, she said, further solidified that stance.
Wells inadvertently represents a lot of specific communities, both on campus and globally: the marching band, the Theater Department, the “What the FAC?” campaign, the companies and websites she speaks and writes for, performers in wheelchairs, those affected by dysautonomia, and the LGBT community.
Does she think about the weight of her efforts? She smiled and said softly, “A little bit.”
She begins getting ready to catch the bus for rehearsal. Before leaving, she pulls a full tub of prescription bottles off her desk. She takes medication to help blood flow to her brain and increases blood pressure.
“I take two of these three times a day, and one of each of these three times a day. So that’s … 12 pills a day, a fish oil and a vitamin,” Wells said as she tapped each bottle over the palm of her hand.
By the time she’s at the bus stop, Wells is already distracted with the pre-show responsibilities waiting for her at the FAC.
She said she is excited for the show, saying it has a very important message about hookup culture.
“My character doesn’t say much, I just think the presence of having a differently-abled actor in this show says so much in itself, so I’m really excited. I’m really excited to show a side of a differently-abled person that I don’t think a lot of people think about.”
Wells is fearless, even when it comes to accepting criticism for her performance art.
“I’m excited to hear what the people have to say about it,” she said, speaking like a true artist.
“Donny Johns,” which made its debut on Thursday in the small and intimate black box Curtain Theatre, was sold out all weekend.
Wells said her parents came to see the show, but her grandparents did not because of the play’s vulgarity. This was understandable; while being beautifully executed, the musical was frank, contentious and hilarious. The opening number alone was full to the brim with swears, and the second included a make-out scene between a professor and her female student.
Though the performance was the first draft of the less-than-a-year-old workshop version of the musical, it did not disappoint. And neither did Wells.
“Donny Johns” runs through Dec. 5.
Sarah Gamard can be reached at [email protected]