An Uncomplicated Life (28 page)

This was about the time she attended the conference in Columbus and overheard Kerry and Ellen at lunch. “I’d like to introduce myself,” Missy said.

Kerry started the morning dispirited and ended the day enriched. She learned what she didn’t want for Jillian. And
she met Missy Jones, someone who thought the way she did. After living a vagabond life growing up, she had now settled in suburban Cincinnati. As soon as Missy launched her program, we wanted Jillian to be a part of it.

In 2012, NKU was one of two universities in the country that had a fully included program for students with intellectual disabilities.

Was this fate? I don’t know. I think about it, just as Galileo pondered the alignment of the stars. It’s about as knowable.

I see the chances Jillian has been given and what she has made of them. I know only this: None of us is in this alone. We all need a few hands to help tug our lives. Whether they arrive by design or fate or something greater and more cosmic, we’ll never know. All we can do is use all that is given to us to the fullest.

Fate and need had bisected opportunity at a sweet spot in time. Ryan Mavriplis enrolled at NKU in the fall of 2008 as part of Missy’s nascent program. Jillian Daugherty followed him a year later.

By 2011, 27 colleges were getting federal grant money. Some remained entirely segregated. They were what Missy called “Special-Ed College.” Others were hybrids that allowed students to take two “typical” classes while also getting the life skills indoctrination. Missy believes only two universities in the country remain fully included, one being NKU.

Marge Thompson raised Tommy at home. Thanks to his family, he was the best he could be. Thanks to Tommy, his family learned some things about the beauty of difference. That said, Marge never thought that her son could ever have lived even remotely independently. “She couldn’t envision taking it as far as we have,” Missy said.

Walls to bridges. Jillian has never been anchored to the low expectations presented to Tommy in the 1960s. His dreams then would be Jillian’s nightmares now. And yet, their goals are the same. Dignity. Respect. A place where they can hold their heads up and belong.

Jillian fights to be seen and not looked at. That’s a world of difference from Tommy Thompson. It didn’t occur to the world that he was worth seeing.

Sadly, Tommy didn’t live long enough to see the world for people with disabilities change for the better. In 1984, Marge Thompson heard her son coughing violently in his bedroom. “Are you going to throw up?” she asked.

Tommy leaned over his bed, practically doubled over, trying to vomit. He sat back up, still coughing. Marge ran to the telephone in the hallway, just outside Tommy’s door, and called an ambulance. “My son is dying,” she said.

She went back into his room long enough for him to look at her, take a breath and close his eyes.

The autopsy revealed that Tommy Thompson had died of a pulmonary edema. He was 29 years old. The coroner later said that on average three people a year in the Cincinnati area died the same way, usually at about age 30. Their lungs fill with fluid, and they choke to death.

Tommy’s death had nothing to do with his disability. It just happened.

After Tommy died, Missy and her two sisters went their separate ways. One lives in Cleveland, the other in Arizona. Marge Thompson is 84 years old and lives with Missy in Cincinnati.

A few times a day now, Jillian, Ryan or any of the other students
in the program will pop into Missy Jones’s office. They just chat, mostly. If they have a problem with a class or one of their mentors, maybe they’ll bring that up. Usually, they just enjoy the fellowship.

I asked Missy about Tommy’s legacy. She takes a long look at the photographs on her office wall. There are some of Tommy at his segregated school, doing his best, being Tommy.

“Jillian,” she said. “Jillian is Tom’s legacy. Ryan is his legacy. Anyone who is having an opportunity to reach out and experience life to its fullest is his legacy. It’s my parents’ legacy, too, whether they know it or not.”

Tommy Thompson is buried in Cincinnati, right next to his dad. We can’t know how life would have been different for him had he been born 35 years later. Or maybe we can. She’s right there, standing in Missy Jones’s office doorway. The Jillian Daugherty Show, just passing by on her way to class, wanting to say hello.

CHAPTER 22

College

If you’re alive to the possibility of what’s different,
it gives you a gift every time you go. You can play bad.
You can make a lousy score. But you
can’t lose. And I love that.
—
BILL CLINTON,
GOLF DIGEST
, FEBRUARY
2012

O
n an impossibly bright morning in September 2009, Jillian ker-bumped from the passenger seat of the family taxi and stepped into her newest future. High school graduation hadn’t been the end of the school bus line for her. It was a transfer stop. They called it “commencement.” A beginning. Yes.

The accoutrements were the same: An impossibly fat 30-pound green backpack, a first-day hairdo—short and neat, parted to one side—and the familiar happy-hop in her step that telegraphs both Jillian’s mood and her presence.

But everything was different. This was a new frontier. It was an unfamiliar rung on the ladder of possibility. It was Jillian’s first day of college.

“I’m having a great day so far,” she announced on the short drive from our home to the campus of Northern Kentucky University. It was barely 9:00 a.m. Jillian spent most of the ride staring intently at four index cards Kerry had made for her first day. They contained basic information: The names and places of her two classes; how to get from the car to the elevator of the BPE building, what button to push, where to go from there. Jillian read them over and over even though she’d done a trial run a few days earlier.

“When I get on the elevator, I go to the second floor,” Jillian announced.

“Yes,” I said.

She also had a form that allowed her to use a digital recorder to tape the lectures. Jillian will ask another student to take notes for her. They will supplement Jillian’s own notes. Missy Jones will appoint a mentor to help Jillian with her work and getting socialized.

She will take two classes, American History Since 1865 and University 101, an introduction to NKU all students must take. Between the mentor, the note taker, the tape recorder and Jillian’s own efforts, we will scale this newest hill. Sometimes at a sprint, sometimes while running in place. Always ready should the wheels come off.

I don’t recall what I expected of that day specifically, or of the thousand or so since. You can have high expectations without being specific. General goals are flexible and more easily adjusted. I know I wanted the same for Jillian that day that
I wanted for all of her first days: Do your best. Be your best. Seize the moment. Be Jillian.

I was afraid, though. For every other milestone, we’d held Jillian’s hand, sometimes literally. If we weren’t at school, we were a ten-minute drive away. Public secondary school was a leap, but within a self-contained environment. One building, all day, cocooned by any number of teachers and peers, most of whom knew her, and she them. Jillian’s newest future was on 400 acres, with more than 40 buildings, filled with 13,000 undergrads. This big, sprawling room of possibility didn’t know my daughter.

During the previous year, when she was a senior in high school, we drove Jillian to NKU four times, twice in February and twice more in April. She took an orientation tour of the campus, observed classes and met potential mentors. Twice during the summer, after Jillian had gotten her schedule, Kerry walked her to her classrooms.

Kerry also made sure Jillian’s college experience included things a typical college student would need if she were going away to school. Jillian and Kerry went shopping for new comforters and pillows and towels, as if Jillian would be moving into a dorm room. The preparation had been thorough. Jillian was as ready for college as all of us could make her. What of the expectations?

I had a vague notion of what I wanted college to be for her. I wasn’t silly enough to think Jillian would learn the way a typical college student would. She had graduated from high school mostly because she’d met all the requirements, not because she was as adept at her schoolwork as even the lowest-achieving typical child.

College would accelerate that. Jillian would do what she’d done in high school: Learn at her pace, with help. Work as hard as anyone. She wouldn’t get a degree. She was registered as a non–degree-seeking student. But that didn’t mean she wouldn’t get an education. It didn’t mean she wouldn’t learn. I wanted Jillian to learn more how to belong, how to get along. It would be a social experiment as much as anything. I wanted her to cope with her disability in a wider world. I wanted her to sing her triumphs to a broader audience, one older and wiser enough to see her for who she was, not who she wasn’t.

I wanted all this in the larger landscape beyond one building and seven bells a day. I wanted her to have friendships. Not superficial, patronizing acquaintances, but relationships, deep and impactful. I wanted people to feel better for having known her. I wanted them to understand that learning defies shapes and sizes and boundaries. We’re all lifetime learners.

As much as I wanted Jillian to be taught, I wanted her to teach.

There was an implied contract I wanted satisfied. I wanted NKU to be open-minded and big-hearted. I wanted Jillian embraced in a way she never was in high school, and I wanted it because it was the right and enlightened thing to do.

I wanted her to come to the party bearing gifts, not just receiving them. I believed she would emerge more independent and more self-assured, in the way all adults should be. I wanted her time at NKU to be joyous and responsible and fulfilling. I wanted her to leave there purposeful and confident, and happy for the time she’d spent. I wanted everyone she met to feel the same.

I wanted all that from her very first day. I had no idea if any of it would happen.

There was a model, though. There was a precedent. A few years earlier, I had met Deb Hart. Hart is the director of education and transition at the Institute for Community Inclusion at UMass-Boston. That is a big title for someone who is basically a grassroots battler. Hart has spent 40 years plowing the hard and dry fields of Why-Not. She can tell you about perceptions and stereotypes and the act of moving a mountain. “It’s very hard for humans to change,” she says.

Hart began her work in 1973, 16 years before Jillian was born, as a student teacher in the Massachusetts public schools. We forget now what it was like in 1973 to be someone like Jillian or Ryan. Deb Hart recalls it vividly. Much of her work involved changing hearts and minds, and not just those within the school and governmental bureaucracies. Parents also needed educating. “You have to have high expectations,” she said.

PARENTS SHARED IN THE
low expectations. Part of the problem was that nobody had ever told them their kids could learn. Nobody ever offered them a Why-Not. From the maternity ward to the public schools, parents had been told their kids with special needs could not achieve.

Parents also had grown comfortable with the babysitting approach to special education. It’s safe and easy. Parents welcome the extra four years of high school that the law allows. They want the benefits that accrue from not working.

“They’ve had to fight for benefits. The thought of something that’s going to mess with that” doesn’t appeal to them, Hart said. “To get Social Security benefits you have to show
you can’t work. Our special education system has had the unintended consequence of enabling dependence. It encourages students with disabilities to be satisfied. Their families didn’t teach independent living skills, so special ed did.”

Into this evolving landscape marched Jillian Daugherty. We arrived at the drop-off area, and Jillian looked up from her notes. “This is it, Dad,” she said. “I’m a little bit nervous, a little bit.”

“Everybody’s nervous on their first day,” I said. “You have your phone and your directions?”

“Yes, Dad.”

“Lunch?”

“Yep.”

I told her everything would be fine. I said it more for my benefit than Jillian’s. Assuring Jillian that college would be fine was like lecturing a mouse on the possibilities in 300 pounds of cheese. Even if she was nervous, a little bit.

“You’re good, right?” I asked. So lame.

“Yes, Dad.”

I squeezed her hand as she exited the car. “I can’t tell you how proud we are of you,” I say. “I love you very much. What a great day. Have fun.”

“Okay, Dad,” Jillian says.

I told her I’d wait in the lot a few minutes. “Call if you need help,” I said

“Don’t worry ’bout it,” Jillian answered. “Your little girl is in college now.”

And there she went.

CHAPTER 23

In the Swing

I am not concerned that you have fallen—I am
concerned that you arise.
—
ABRAHAM LINCOLN

W
e picked her up at 2:30 p.m. in the same place I’d dropped her off. We didn’t know what to expect. We should have though. Just because Kerry and I had been fearful didn’t mean Jillian would be. And she wasn’t.

“My history teacher, oh my God, he makes me laugh,” she said the minute she got in the backseat.

“So, you had a good day?”

“Yeah. You guys, it was the best,” Jillian said.

That wasn’t exactly true. It was Jillian, spinning the moment to fit her personality.

In her second class, the professor suggested a getting-to-know-you game. The students stood, declared their names, then offered an alliterative description of themselves.

I’m Rob, and I’m romantic. I’m Melissa who’s money-conscious.

Jillian jumped up at her appointed moment. “I’m Jillian, and I like to eat.”

“Okay, this is Jillian who likes to read,” the professor said, misunderstanding Jillian’s words.