St. Jude survivor empowers Arkansas students as a deaf-blind intervener

LITTLE ROCK, Arkansas — One of Nikki’s earliest memories is a windy car ride that snatched her hat off and blew it away; she felt the air on her bald head, and cried and cried. It's a memory from when she had eye cancer. Diagnosed at 2 years old, she underwent chemotherapy and the removal of her right eye.

Another of her visceral, visual flashes of memory: being back for a checkup at St. Jude Children’s Research Hospital, where she had undergone treatment, and seeing a little boy in a wheelchair tented with plastic. She thought the plastic was to protect them from the boy, but her mom explained it was the other way around — his body was too weak to fight off germs from other people. Nikki remembers how that made her feel.

As the years passed, Nikki Morris’s native compassion would flower, and by the time she was grown, she would know she wanted to pursue a helping career. Today, she is the first paraprofessional in Arkansas credentialed as a deaf-blind intervener, specially trained to help bridge the gap for deaf-blind students by providing consistent one-to-one support with communication, information and understanding. To get here, she had to leave the small town she called home.

Palestine, Arkansas is a wide place in a flat road, a town of 3 square miles near the Mississippi River, surrounded by unincorporated communities with evocative names like Greasy Corner and Four Gums. If Palestine had no stoplights, it also had no bullying, for which Nikki was grateful. Still, as a teen, she wore her hair across her prosthetic eye. Show me the place where growing up is easy.

Her grandmother had a garden, fruit trees, walnut trees, and a well where they pumped water. It was a self-reliant lifestyle. “We had beans and corn bread and rice and spaghetti, and we didn't eat out at restaurants,” said Nikki. You had to go miles up the road just to find one, and that was fast food. “Those restaurants, you pay up front, and we didn't even eat there but maybe once or twice a year. So when I moved to Little Rock, we went out to eat, and I was like, wait, we didn't pay for our food! I didn't know that you pay after you eat it because I had never been to a restaurant like that. I was green on a lot of stuff moving here.”

It may seem like an anecdote about country comes to town. But if you look a little deeper, it is, in miniature, about encountering a world that assumes everyone shares the same frame of reference. It’s about learning to adapt so difference isn’t debilitating. That’s how Nikki has lived almost all her life with one eye in a world that takes for granted two. As a certified intervener, that type of adaptation is what she strives to teach her students.

Deaf-blindness affects one’s ability to communicate and be communicated with; it has developmental, cognitive and behavioral ramifications. Concepts that most of us take for granted are things we experience through sight and hearing. For example, said Nikki, “Deaf-blind children need to know when they're holding a ball and the ball rolls away, it is still somewhere in the room, and it didn't just disappear.” You have to present them with “the whole elephant.”

“If you have three kids, and you lead one out to the front of the elephant, the other to the side of the elephant, and the other to the back of the elephant, and you ask them all to describe it, they're going to give you three different things. This is where the intervener comes in. You give them the whole picture. You take them around the elephant.”

Nikki also teaches life skills to students who are developmentally delayed, with or without dual sensory impairment, with the goal of helping each become as independent as possible.

She feels blessed that the only vestiges of her retinoblastoma are the eye strain and neck pain that can accompany monocular vision. Small adaptations — like the extreme punctuality she’s known for — help ensure that she doesn’t get a headache from having to look too long toward her blind side. Like at church, where the people in her life automatically sit to her left for her comfort.

“I played basketball in high school, I was a cheerleader, I had a normal life,” she said. It might not have turned out that way; she's grateful it did.

Now, with gratitude and empathy as her motivations, she wants to empower her students to live as adaptively, independently and fully as each of them can.