And when was it that we saw you sick or in prison or neurologically or cognitively impaired or autistic or epileptic or…? And the king will answer them. “Truly I tell you, just as you did it to one of the least who are members of my family, you did it to me.” Matthew 25:39-40 (Unauthorized Version)
Alex had intractable epilepsy and cerebral palsy with autistic features. He died in his sleep at age 7. In the early morning hours I went to the ER to be with Alex and his family. Shortly after my arrival the chaplain asked the family if she could call their pastor. Alex’s mother replied, “Pastor? Church? None would have us. We were told that our child was a disturbance with his crying out and intermittent seizures. Some would glare at us when we rolled Alex’s wheelchair into worship. Invariably the usher would embarrass us by asking us to move to the vestibule. Church? Call no church for us!”
Unfortunately this story is a recurring one in churches today. Despite statements, declarations, and letters from various church groups,1 children with debilitating neurologic conditions and their families still experience difficulty finding a place in the church. The scope of the problem is often unrecognized. Even as the church seeks to define itself as inclusive, many with disabilities have neither a real place in the church nor ministry geared for them. At the same time we build fine buildings, or we argue over who shall receive communion or whose baptism counts, issues that have little to do with those trying to survive in the world.
The scope of chronic neurologic disease is broad. For example, 5.8 per 1,000 children have an autism spectrum disorder. Alzheimer’s prevalence is 67 per 1000 population. Epilepsy prevalence is 7.1 per 1000 population. The challenge will grow as medical science continues to increase the survival rate of high-risk infants and prolong life expectancy on a broad front.
Chronic neurologic disease, especially in children, can present with complex problems. A child with cerebral palsy may also have epilepsy, learning disabilities or mental retardation, and secondary behavior problems. There is also poverty and lack of employment opportunities for parents as they must stay at home to care for the disabled child. The parents’ problems are further compounded by a sense of loss of the hoped-for child, self-blame, prolonged grief, depression, and an increased divorce rate.
Among all with disabilities, the single characteristic many find in common at one point in their lives is isolation. Their conditions isolate them through immobility, unemployment, inadequate education or training, housing unsuitable to their abilities, poverty, and, all too frequently, lack of adequate healthcare.
Unfortunately the church often adds to this isolation by failure to appreciate or respond adequately to special needs. Oh, yes, there may be a wheelchair ramp, but, once up the ramp, there may be no classes, worship, and activities geared to special needs persons. Mainstreaming, seen as a model in schools, is often not well received in the church.
There is Biblical basis for reaching out to include those who are disabled or otherwise-abled. Jesus seems to go out of his way to meet the needs of neurologically impaired folks: the man born lame, the child with epilepsy, and the withered hand. In the first century the good religious folks for the most part ignored such needs or, even worse, blamed the problems on sin, even the sins of the parents. The biblical narrative offers examples of love and concern for those marginalized due to their neurologic or medical conditions. There were those who carried the paralyzed man on a bed to Jesus (Matthew 9:2) and those who “brought to him a deaf man…” (Mark 7:32). A father brought his epileptic son (Luke 9:38). The lepers came on their own as they, considered contagious and ritually unclean, had little or no community (Mark 1:40-45).
The faith community can be of extreme importance in the lives of those with chronic neurologic condition and their families. Failure to include them can be devastating as in the case of Alex and his parents. The challenge to the church is to create the conditions that will support and maintain the spiritual life of individuals with disabilities and their families. Such cannot wait until the need shows up at the door but must take shape through long term planning for space, teachers, programs, and workers. This means the budget must also reflect the concern.
Someone should be designated as “Minister to Those Differently-Abled.” A team should be assembled proactively that includes those with disabilities, their families, the parish nurse, other health professionals in the church, and special education teachers.
Inclusive means everyone is invited to the Lord’s Table, the baptismal font, the church. Everyone!