University of Iowa student doesn't let disability become barrier to human connection

CHICAGO – Hannah Soyer was at the beginning of her life when she was forced to think of its end.

A close friend with a similar type of muscular dystrophy died from complications of pneumonia, which preys on people with weak coughing muscles. Casey was the brave one, the extrovert. The one who wore the T-shirt that said, 'Staring will get you nowhere.'

'I never really considered that I might die earlier than my friends,' Soyer said. 'It made me realize that I have to put myself out there.'

Soyer, a University of Iowa freshman, left her hometown of Johnston in August to start college two hours away, despite needing 12 part-time student helpers who provide care almost 24/7.

Soyer speaks up in class, performed on stage at an Iowa City coffee shop and occasionally goes to the bars, although, because of her wheelchair, 'I'm at crotch level, which isn't very pleasant.'

Earlier this month, she went on a road trip.

'When I want to do something, I'm going to do it,' Soyer said.

Hopeful, but realistic

Soyer was diagnosed with Spinal Muscular Atrophy (SMA) as a baby. Her mother noticed her hips sway as she learned to crawl and knew something wasn't right. SMA is one of the most prevalent genetic disorders, affecting one in every 6,000 babies.

SMA has various degrees of severity, but all forms involve muscle wasting and reduced mobility. Hannah's Type 2 isn't the most severe, but can still result in a shorter lifespan.

Complications from respiratory infections are a major threat.

Soyer had an electric wheelchair by age 5. Three years later, surgeons fused a metal rod to her spine to help her sit up straight.

'I've noticed I'm becoming weaker in my arms and not able to reach as far,' Soyer said.

That's a sad truth of a degenerative disease.

Barriers to connection

But while Soyer's muscles are weak, her mind is strong. She's clever and possesses a bone-dry sense of humor.

In high school, she and a friend, Andrew Tubbs, started posting YouTube videos as part of a channel they called the Cripple's Corner. The funny, occasionally blurry videos hit on topics ranging from how parents should interact with their disabled teens to whether non-disabled people are entitled to use the word 'cripple.'

'Humans were made to have relationships with other humans,' Soyer says in an October 2012 video. 'It sucks if you have this thing, you know, a disability, that keeps you from doing so.'

But Soyer tells viewers they can't let a broken heart keep them from seeking new relationships.

'She is by far the most unique woman I've met in my life,' Tubbs, now a sophomore at Wartburg College, said of Soyer. 'She has a great sense of humor, and she's a great social advocate.'

Tubbs has Thrombocytopenia-Absent Radius (TAR) syndrome, a rare genetic condition that results in the absence of a radius in either forearm. He calls himself a T-Rex in one YouTube video, a description he likes because it makes people loosen up.

'There's a big stereotype about disabled people that they are asexual and don't have a sex drive,' Tubbs said 'That is complete bull----.'

Starting new

Going to college has been an adjustment for Soyer.

'I had grown up with a lot of people around me who were completely used to it (her disability),' Soyer said. 'Coming to Iowa has been very different.'

But Soyer has started to make friends through her helpers and in classes.

As with most of her peers, Soyer lives part of her life on social media. She tweets, sends daily text messages to her mom and emails professors.

It was through Twitter that she first connected with folk-rock musician Matt Nathanson.

Soyer sent letters to five celebrities last spring asking one to take her to prom. (Celeb prom crashing has become quite the thing.) No one responded in time and Soyer found another date.

But in March she got a direct message on Twitter from Nathanson, who invited her to his performance at the Iowa State Fair in Des Moines.

'I went to see his concert and got to meet him,' Soyer said.

It wasn't long after that she started planning a road trip to Chicago to see Nathanson in concert.

This took a lot of arranging. Not only does Soyer have a wheelchair, but she has a lot of other equipment she needs for sleeping and bathing.

She found a handicap-accessible hotel downtown and mapped out city bus routes so they could save on cab fare.

A rite of passage

On a crisp November morning, Soyer and two helpers, Naomi Nothdurft and Lexi Ewoldt, waited in downtown Iowa City for the Megabus headed for Chicago.

'I'm so excited!' Soyer said, smiling at Nothdurft, a UI senior from Sioux City.

Five hours later, the bus arrived at Chicago's Union Station, where the women picked up a city bus to the hotel. They had less than an hour to get ready for dinner, which – if you know college girls preparing for a night out – is not much time.

'The green eye shadow looks good with your purple nail polish,' Ewoldt told Soyer as she applied the sparkly substance to Soyer's lids.

With a purple 'Love' T-shirt showing the 'O' as a heart with a wheelchair, Soyer and her helpers found a taxi to go to the restaurant.

The ride was filled with laughter and observations  such as, 'British guys always wear skinny jeans.'

Pushing back

When the women arrived at the Riviera Theatre around 7 p.m., hundreds of fans were already there. Theater staff led Soyer to an area set aside for those in wheelchairs.

A black railing bisected her view to the stage.

Soyer was not happy.

'I said, 'I'm going to the front,' and he said, 'No, you can't do that because it's a liability issue,' and I said, 'Well, I think that's being very discriminatory' and he said, 'Well, that's just the way it is,'' Soyer recalled, describing her conversation with a bouncer.

She pulled out her phone and tweeted at Nathanson, asking him to pull some strings.

Not wanting to wait, Soyer sped down the ramp toward the front of the theater. The general admission area was teeming, but Soyer wheeled into a restricted side aisle.

The bouncers, large men used to booting belligerent drunks, didn't know how to handle this persistent young woman.

Eventually they let her be.

Soyer sang along with all the songs and even caught a wave from Nathanson.

Across the metal barrier, a sold-out crowd pulsed closer to the stage, inevitably touching each other and moving to the music. Soyer craves that kind of connection and is willing to push boundaries to get as close as she can.

The morning after the concert, Soyer and her friends climbed back on the bus for Iowa City. They looked tired, subdued.

This comedown, too, is part of a road trip. Soyer said she has too much to accomplish to rest for long. She plans to major in journalism and English, with hopes of one day publishing a lifestyle magazine for people with disabilities.

'I've got homework,' she said with a smile.