Theme VI: TTT | Helping Hand

by Daniel Huang

Courtesy of Katherine Landis

Courtesy of Katherine Landis

Katherine Landis, a freshman in the Silver School of Social Work, needed money to stay in school.

At a place like NYU, with its dubious honor of being the most expensive college in the nation, this hardly sets her apart.

What does?

Landis lives with spinal muscular atrophy, a rare genetic condition that renders most of her muscles too weak to function. She moves around in a wheelchair operated by a control under her right hand – “my left arm doesn’t work,” she said – and requires the twenty-four seven care of a personal assistant to perform even the most basic actions.

“Think about your day, from the moment you get up to the moment you go to bed,” Landis said. “Think about all the things you do every day. I need help with pretty much all the physical aspects of that.”

Dressing, bathing, going to the bathroom, brushing her teeth – the list goes on. When Landis eats, she needs someone to feed her. When she reads, she needs someone to turn the pages.

This doesn’t mean she hasn’t mastered a few tricks. In elementary school, because her arms were too short to reach the top of a regular notebook page, she learned to flip the paper around and write her name upside-down on the bottom-left corner instead.

For all her physical incapacities, Landis boasted a sharp mind and an undiminished ability to communicate. She remembered being one of the smarter kids growing up. In high school, honors-track classes filled her schedule.

By sophomore year, she knew wanted to pursue a field that would allow her to help others, a nod to everyone in her life who was helping her. Her calling was social work.

“Most colleges didn’t even have a program for social work and here was a school that not only had a program, it had a whole school!” Landis said. NYU zoomed to the top of her list.

When Landis received word last spring that she had been accepted into the NYU Silver School of Social Work, and a full ride no less, she “felt like it was meant to be,” she said.

Then the problems started.

Landis receives disability benefits from the government through Medicaid and Social Security, which pay for the personal aide that she hires. As early as last May, she began notifying the U.S. Social Security Administration that she was going away to college and had to transfer her Medicaid from Florida, where she grew up, to New York.

Months of headaches, dozens of phone calls, and countless hours of pushing and prodding followed. At one point, Landis called the Social Security office back five times to input her information – each time the information was incorrectly placed. Finally, she had to make a trip up to the New York office in person to make sure everything was completed properly.

“It’s like the right hand doesn’t know what the left hand is doing,” she said.

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As Landis was wading through this tangle of red tape, a friend from home had agreed to stay with her for the first month and act as her personal aide to help with the adjustment.

The hope was that once Landis’ benefits were in place, her friend could help train the new assistant. But she failed to consider the mess of bureaucracy that would slow things down at every turn.

Soon, the month was coming to an end, and her benefits were no closer to being confirmed.

“I was running out of time,” recounted Landis. “[My friend’s] month was finishing up and I didn’t have the money to pay for twenty-four-seven care on my own. I didn’t know what to do.”

Landis posted her dilemma in an SMA group she belonged to on Facebook. A friend immediately replied with a suggestion: ask for help from your fellow students. Together, the two wrote a brief letter explaining Landis’ situation, and Landis began combing the NYU webpage for every student organization.

“I sent out 154 emails in one afternoon,” she said.

Over the next few days, Landis received dozens of responses. After a few more exchanges, she narrowed the list down to six rotating volunteers. They immediately made a huge difference.

“It already said a lot about them to sign up for this, but everyone’s been so accountable and understanding,” Landis said. “They’re never late, they stay longer if I need them to – they do more than I could’ve asked for.”

With her friend leaving in mid-September, these volunteers were largely able to take over. There were still some gaps in the middle but Landis’ cousin who lives in the city was able to step in and cover them. There was even an update from Medicaid, a letter from the office stating Landis’ benefits would officially be transferred to New York on Oct. 1. Things finally seemed like they would be OK.

Then, they got complicated again.

In the last week of September, Landis’ cousin got a new job. With classes picking up and other commitments vying for their time, Landis’ volunteers also had to scale back their schedules. Furthermore, while her Medicaid would be cleared on Oct. 1, it would take an additional week for the state to evaluate how many hours of personal care Landis qualified for. Then, it would take even more time for the personal care agency to connect her with an appropriate assistant.

Landis’ only option was to resort to a private agency, which typically charged $22/hour for a care provider. Subtracting the time from her volunteers, she’d need an aide for at least the next few weeks.

All this quickly added up to thousands of dollars, money she didn’t have. Without someone to help her, Landis simply would not able to stay at NYU. A medical leave threatened to disrupt her education.

With time running out, Landis’ sister found gofundme.com, a crowdfunding site that allowed users to create fundraising campaigns. The two of them quickly put together a page explaining Landis’ predicament, that any amount was greatly appreciated, that every little bit helped. Then, they handed it over to the Internet and hoped for the best.

“The responses were…” said Landis, taking a deep breath. Her voice trailed off and her eyes widened. “Crazy.”

Within three hours, her page had brought in close to $800. Less than an hour after that, the total neared $1,500. The original target had been $2,000, but seeing the flurry of activity, her sister said they needed to raise it. They decided on $10,000, an amount that could cover over two weeks of twenty-four seven care. It seemed impossible.

By the end of the campaign, the page had eclipsed its goal with 800 social media shares and almost $12,000 raised.

“It kinda restores your faith in humanity, as cliché as that sounds,” Landis said.

Many of the contributions came in donations of $10 to $50. A lot were posted anonymously. One in particular stood out – a $2000 donation from a source who chose not to disclose his identity.

“There aren’t enough words to thank them. Words would not do it justice,” Landis said. “Sometimes, people do things that remind you they’re really good at heart.”

Laura Zablit, a sophomore in Tisch, first met Landis through Project Outreach, an NYU leadership program. She is one of the volunteers who cares for Landis, but these days, “I’m just helping out a friend because that’s what friends do,” she said.

“Adjusting to college is hard, New York City is hard, and people don’t even do a good job. Imagine having to go through all this at the same time,” Zablit said. “Kat’s a really strong girl.”

It also doesn’t hurt, she said, that Landis has a great sense of humor.

“When we’re together, we can be vulgar or crude or whatever. She never judges,” continued Zablit.

“The number of times she’s said to me, ‘Laura, if my hand could move, I’d slap you right now,’” she admitted, laughing.

Landis cedes all the credit to her loved ones. From her friend who agreed to drop everything to live with her for a month, to her online group of SMA friends, always eager to send advice and encouragement, to her volunteers, to her parents and sisters, and to all the people who shared her story, donating whatever they could to meet her goal.

But in all these cases, Landis did something so profoundly simple it often gets overlooked. She asked.

Approaching others for help is never easy. It takes equal parts courage and humility, and often many of us are too afraid, too proud, too flawed to simply ask.

For Landis, this was never an issue.

“I’ve had to do it my whole life,” she said. “If I can’t reach a pencil on the table, I ask the kid beside me to hand it to me. If you need help, you just ask for it. People are much more willing than you might think.”

Time and time again, in the face of every new challenge, Landis had the wisdom to recognize that, for all her strengths and abilities, there are some things she just can’t do herself. She needs help. We all do.

“My mom always instilled in us this sense that needing help is nothing to be ashamed of,” she said. “People help you, you help others.”

Landis said this like it’s the most obvious thing in the world. In a way, it is.

“That’s what makes the world work.”

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4 comments

  1. Karol Holiday · October 27, 2013

    So proud of my friend Kat. I am blessed to know her!

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