An Uncomplicated Life Read online

  When Jillian was a sophomore, Kerry met Missy Jones. Jones was an assistant professor at Northern Kentucky University, a burgeoning commuter school 30 minutes from our house. Over the next several years, Jones would build an educational program at NKU that included people with intellectual disabilities in regular college classes with the help of student mentors.

  When Kerry informed the guidance counselor at Loveland and the head of the special-education department that Jillian would be attending NKU, they each laughed dismissively. “I don’t think so,” they replied.

  That might explain something else we found disturbing. Every copy of Jillian’s Individualized Education Program included space for a parents’ vision statement. Each time, Kerry included the goal of attending college. Once, when Jillian was in high school, school officials removed that paragraph from the IEP, only to reinstate it when we protested.

  It is impossible to describe how it feels as a parent to be given the back of that hand. That’s where our finger-jabbing comes in. Graduation day arrived on a breeze of vindication and a sigh of relief.

  What if we’d listened to the school people? So many parents still listen. They allow school people to tether their children to the leash of narrow expectations, either because they don’t know any better or because they’re not willing to make waves. People whose careers involve furthering education for kids with intellectual disabilities claim that their biggest hurdle is not the unwillingness of schools to provide their disabled students with the basic rights to strive and dream. It is convincing parents that striving and dreaming are rights that belong to everyone, including their own special-needs children.

  Jillian made the walk for herself. But the path didn’t disappear. Two years after she entered NKU, her friend Sarah Klein registered for fall classes there. The Loveland schools people were excited and amazed. They took credit for Sarah’s triumph. They acted as if it were their doing. Jillian was in her third year at NKU by then.

  Families still threaten school districts with due process hearings to get the special services to which they are entitled. The parents of Jillian’s friend Katie Daly went that route barely a year after we had. Doors opened for us. Then just as quickly closed.

  “It’s not that schools don’t know any better,” Kerry says now. “It’s that schools will continue to find the cheapest way to educate.”

  Jillian learned to persevere because that’s what she needed when she started every race with a bowling ball on her ankle. She didn’t settle for the path of least resistance.

  Kerry and I learned what it meant to persevere, too. We got it from Jillian.

  The passage of time shivers our knees. Graduation day gets us all, in one jelly spot or another. With Jillian, it was a joy, a wonder, a pain, a pleasure, infinite sadness, timeless hope. A patience with some, a fight with others, a full-time yearn that, someday, everyone will not simply look at her, but will see her as well.

  Maybe beginning today. Graduation Day.

  The seas part. The world stills. She flips the tassel.

  Jillian had a party that night. Kelly came with his girlfriend, Ruby. The aunts, my brother, Kerry’s cousin, the grandparents Sid and Jean. Jillian’s boyfriend, Ryan, and all their friends. Bill and Nancy Croskey. Evan and the homeys.

  Kerry and I gathered in the middle of it all. Later on, the skies would blacken and roil. A thunderous storm sent the party indoors. For now, the night was perfectly soft. We held each other tight amid the happy chaos. “We did it,” she said.

  We watched our high school graduate, happy and poised and lovely, possessed of an unmistakable spirit and a warrior’s heart. She stood on the back deck of our house, swaying with Ryan. They danced.

  CHAPTER 21

  Missy and Tommy

  Jillian is Tom’s legacy.

  —MISSY JONES

  Somehow, we remained naïve, after all the years. We operated on assumptions of optimism. Anything less would have been self-defeating. We believed the world wanted for Jillian the same things we did, even as that wasn’t often so. The world wasn’t always ready for us. Mostly, we earned our optimism with our sleeves rolled up. We assumed Jillian would attend college. We assumed it would be in a typical classroom setting. That’s how it had worked in high school. Even with the monumental hassles, Jillian got a fully included education. Why would it be any different in college, where the intellects were keener, attitudes more forward leaning and the respect for learning more profound?

  When Jillian was a sophomore at Loveland, Kerry and Ellen went to Columbus to attend a national Down syndrome conference on postsecondary education for students with cognitive disabilities. Ryan was a year ahead of Jillian in school so Ellen’s interest was especially pressing. Like Kerry and me, Ellen believed the college experience would be easier and more pleasurable for everyone.

  We had begun a college fund for Jillian when she was born, just as we had for Kelly. We’d included college in all the IEP vision statements. We’d made it through her high school graduation without backstroking through our tears because we considered graduation to be the next brick in the wall. Kerry went to Columbus invested in all those notions but was entirely taken aback by what she saw when she got there.

  Colleges had “programs” in which students with intellectual disabilities were assigned to their own rooms on campus. They would learn “life skills.” Someone would teach them how to make their beds, do their laundry and use public transportation. The schools would offer them menial campus jobs. Apparently, they thought this was cutting edge, and they were proud of it.

  Once Jillian was tall enough to reach the knobs on the washer and dryer, she was washing her own clothes. She made her bed and her own meals. She didn’t need a “program” for that. She needed a typical college experience that would involve her taking actual classes and making actual rounds of the campus. We saw no benefit in her being sequestered in a classroom of kids just like her, learning to make a perfect square corner with a bedsheet.

  We posed the same questions we’d asked more than a decade earlier: If you want a student to learn to speak, do you put him in a classroom full of mutes? If your child has behavioral issues, would you like to see him with a roomful of kids acting out? What’s being reinforced there?

  “It wasn’t quite what we were looking for,” Kerry said.

  She could not have been more disappointed. The world wasn’t opening up. It seemed to be offering a new set of doors. The only way to discover what was beyond them was to roll up our sleeves again, this time to the shoulders. Optimism is mandatory, and exhausting.

  At lunch in a big banquet hall on the Ohio State University campus, Kerry and Ellen traded lamentations. They sounded like this: “Can you believe what they thought was a college education? If we want our kids to learn how to make their beds, we’ll teach them. We don’t need to pay a college for that.”

  There were a couple thousand conference-goers positioned at round, linen-draped tables for 12. Kerry and Ellen began commiserating with their table-mates, all strangers. Then something wonderful happened. I called it serendipitous, even though I am not a big believer in serendipity. Things happen for a reason. Fate is a spectator, not a participant. And yet I have seen some serendipitous things in Jillian’s life. Moments that couldn’t be explained. Seemingly random acts of benevolent coincidence have swayed me toward some belief in a greater hand, unseen.

  Missy Jones just happened to be seated across the table from Kerry and Ellen. She was an assistant professor at Northern Kentucky University. She was as committed as Kerry and Ellen when it came to inclusive education. Missy heard every word Kerry and Ellen were saying.

  “They were disappointed. I was energized,” Missy recalled.

  It had all begun at Missy’s home some 50 years earlier. Stars always align in some fashion. The talent is in seeing the good in every alignment.

  It was hard to see any good on that day in 1954, when Tommy Thompson was born with the umbilical cord wrapped around
his neck. It had been in that position, denying his brain oxygen, for the better part of a week before his arrival. Tommy was a “blue baby.” Doctors delivered him, then resuscitated him. He was Missy Jones’s older brother by five years. Her story begins with him.

  Tommy entered the world with mild cerebral palsy. The left side of his brain was damaged, so he never had full use of the right side of his body. Doctors told Jim and Marge Thompson their son would never walk. As Marge recalled, they suggested that “Someday, you’ll want to put him in an institution.”

  Jillian’s story lacks that sort of medieval thinking. That doesn’t mean it’s entirely dissimilar. Jillian is who Tommy might have been, had he been given the opportunities she has had.

  The Thompsons wouldn’t hear any of the advice they were being given. “He’s my son,” Marge said simply.

  The Thompsons practiced inclusion, as least as it was defined in the 1960s. They included Tommy in everything they did. Society gave them only so much rope though. “Back then, you hid your kids” with disabilities, Marge Thompson said.

  Tommy played with other neighborhood kids. He went everywhere his family went: On vacations, out to eat, to the country club where Jim played golf. Tommy drove Jim’s cart. They held their son to the same standard as their daughters. He cleaned his room, did the dishes, cut the grass. If he misbehaved, he was punished. “If we treated him differently, he would have acted differently,” Marge explained.

  The Thompsons moved around the country as Jim chased his career dreams. Eventually, they landed in Cincinnati. At every stop, Marge would enroll Missy and her two sisters in school. She’d also ask about Tommy. None of the typical schools would let Tommy attend. There were places he could go, segregated schools and sheltered workshops. At the workshops, Tommy would perform menial tasks such as assembling cardboard boxes until there were none left to be done. Then he would be ordered to put his head on the table and be silent the rest of the day. That could be hours, just sitting there, with his head on a table.

  At one point, Marge pulled Tommy from a workshop where he sat idle most of the day. He never went back. No one from the workshop ever called to ask where he’d gone.

  Tommy, like Jillian, had an innate compassion that captivated his family. Missy would arrive home on the school bus from kindergarten, and there would be her big brother, ten years old, sitting on a rock at the end of the driveway, waiting for her. Jillian had her rock, too, where she sat and waved goodbye to her brother and his friends on Saturday nights.

  As Missy got older, on the rare occasions when she had friends over, she would never tell them about her brother’s condition. She wanted to see how they’d react upon meeting him. The responses ran the spectrum from fear to disdain to compassion and complete comfort. Missy called her brother “my thermometer on the world.” I remember that Kelly never kept friends who didn’t also embrace his sister.

  When Missy learned to drive a car with a manual transmission, Tommy sat in the passenger seat, shifting the gears as she worked the clutch. Decades later, Jillian would ride in my lap, steering my car down empty country roads, insisting she could drive.

  Jillian has expanded the possibilities. Tommy would have liked her. It’s not that Jillian has more innate ability than Tommy. But she has been given more opportunity and experienced more. The world’s classroom is no longer so segregated.

  Jim Thompson owned two Orange Julius franchises at local shopping malls. Tommy worked at one and became accomplished at squeezing oranges, making soft pretzels and washing towels. Given a purpose and some responsibility, Tommy thrived. He lived at home, worked, cut the grass, washed dishes, and did his laundry. He had a full life.

  Shortly after getting her doctorate, Missy began teaching a graduate course in special education at NKU. One of her students was a special-ed teacher at a local high school who was looking for ways to “meaningfully include” her intellectually disabled students in some sort of college experience. Missy started by giving extra credit to her grad students for taking these high school kids to lunch.

  She was surprised to learn that parents wanted more for their kids than the occasional social outing or campus job. During focus groups, Missy heard parents advocate for a typical college experience that included classroom work. It was an epiphany for Missy, who also wondered why these kids couldn’t take regular classes like everyone else.

  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

  On 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.