Mark Stephenson’s daughter Nicole was born 25 years ago with severe multiple disabilities, including eye and brain damage, and cerebral palsy. Then six years ago, Stephenson’s mother, now 92, entered an assisted living facility because of dementia.
It was these experiences and others that helped prepare him for his current position as director of Disability Concerns with the Christian Reformed Church in North America.
The 54-year-old Stephenson said, “When Nicole was born, I wasn’t thinking. I was feeling. And I was terrified. She was born prematurely at 26 weeks. She was so tiny, hardly breathing, and we were in a hospital with medical personnel all around. She was put on a triage table to warm her and was intubated immediately.” His daughter wasn’t allowed home for nearly seven months.
He said, “When meeting her today, new people know right away she lives with various disabilities because she doesn’t speak or walk independently. But when taking time to know her, people learn she has a joyful personality. I like to say she lives joyfully with multiple severe disabilities.”
Nicole has lived in a group home the last seven years. Though nonverbal, she understands speech and communicates her own way. For example, a couple weeks ago in church, said Stephenson, a particularly joyful hymn was playing. Nicole raised her arm in the air and shouted, “Woo, woo!”
“And after she moved to the group home,” he continued, “the staff began praying with her at night. Most nights, when they finish praying, she will put her arm up and stroke the cheek of the person offering the prayer.”
Stephenson said having Nicole as his daughter, in many respects, has become his and his wife’s identity. He was trained as a pastor and served congregations for 17 years, but has served the last six as director of Disability Concerns for his 300,000-member denomination. His wife was trained as a secondary education teacher and has spent the last twelve years teaching special education.
In part, he spends his time overseeing 625 disability advocates that help churches in his denomination engage people with disabilities and include them in church life. Stephenson oversees a Facebook page, blog, newsletters, and conferences. He does some projects in conjunction with the Reformed Church in America.
Finally, he likes seeing church buildings become more accessible, but becomes even more excited seeing attitudes about people with disabilities change.